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INTRODUCTION Disasters are complex in nature, which may have disproportionate effects at varying speed. Information exchange is pivotal during the disaster management processes , particularly in the response phase, as the dynamic and complex nature of the extreme natural disasters increases the rate of communication between stakeholders . Social media sites have been increasingly used by government organizations for communication with citizens to enhance a community's capacity in the face of disasters . Recent studies indicate that social media platforms support various activities within the disaster management cycle. For example, Houston et al. propose a functional framework for guiding the use of social media for disaster related research. This framework provides guidance on the use of various types of social media tools that can be used to perform a variety of disaster related activities ranging from preparing and receiving disaster preparedness information to disaster presentation initiatives and warnings as well as predicting disasters. Twitter, in particular, has gone beyond simply a social networking tool to a strategic communication tool during disastrous events all over the world . It has been used in pushing Toyota recalls in 2010 and Seattle Café shooting in 2012 . It also has been used to manage crisis such as Victorian floods , Earthquake of Morgan Hill CA , Haiti earthquake , and Kenya's Westgate mall terror attack . Research shows that institutional actors actively use social media platforms like Twitter and Facebook in their formal interactions with public through sending them warnings and specific advice or directions . Previous studies on institutional theory suggest that institutions normally actively conform to the demands of social media and may develop indirect forms of maintaining control over usergenerated content and the behaviours of social media users . According to Scott , "institutions are social structures that have attained a high degree of resilience. [They] are composed of culturalcognitive, normative, and regulative elements that, together with associated activities and resources, provide stability and meaning to social life". This perspective is in line with World System Theory , as the theory too promotes the notion that information and news typically flows from powerful outlets to minor peripheral information outlets . WST theory has roots in the practice of journalism, however it has been applied to various disciplines including information systems and management , and is a great tool to explain a more traditional perspective on information flow in any system. This theory suggests that all players in an information/news dissemination network act within a particular system, and that major institutional actors dominate the flow of information/news to non-institutional or minor institutional stakeholders. Given the widespread use of social media by public, government, and non-government organizations, often the traditional perspectives such as those of WST on information dissemination between various stakeholders in a network have been challenged. For example, in a recent study by Golan and Himelboim it was found that the structure of the information flow on Twitter displays a hierarchical core-periphery structure; however non-institutional stakeholders such as individual Twitter users conform less than institutional actors such as government organizations to that structure. The above scholars also discovered that while traditionally only a small number of formal institutions were supposed to deliver information to their audience, non-institutional actors assume the role of bridging news sources and audiences using social media tools and platforms. While there are many studies in the literature on the use of social media during natural disasters, most of them have focused on institutional actors and how major organizations or government authorities use these tools to communicate with the people affected by disasters . However, non-government and local community members also play a significant role in information dissemination during disasters. For example, Bird et al. investigated the use of social media during the Queensland and Victoria floods in Australia, and found that community-initiated Facebook groups play a significant role in helping residents finding their friends and family, updating people with real time updates and providing information about the disaster as well as about government departments' activities, and also assisting travelers with information about road closure and necessary advices. Their research found that social media is not only a tool for information dissemination, but also a critical resource to tap into and utilize informal communications. Thus, this paper challenges the predictions of WST and other similar perspectives on the flow of information between institutional and non-institutional actors in a given network or system. In particular, this paper aims to study the role of non-institutional and informal Twitter account holders in dissemination of disaster information. To address this need, we examine how the task of information dissemination was shared between --- SOCIAL MEDIA IN DISASTER MANAGEMENT Unlike traditional information and communication technologies, Social Media platforms such as Facebook, Twitter, Wikis, and SharePoint enable open and online exchange of information via conversation, interaction and exchange of user generated contents . These platforms help people to establish connections and links with like-minded people and community members . Social media users can share and discuss their opinions in real time through posts and links. Therefore, social media can be used to mobilize and organize communities in order to achieve various types of objectives, and update the communities with the most up-to-date information, which might not be available via traditional sources . Social media platforms have increasingly been part of disaster response . These platforms which were previously used during disasters and emergencies by general public, are now being utilized by EROs, Governments, and non-Governmental organisations to manage disasters. During natural disasters social media provides access to relevant and timely information from both official and non-official sources which can help to facilitate a feeling of connectedness . This provides connectivity to loved ones, and brings comfort for the community as well as support and assistance to potentially distressed individuals and populations . The utilization of social media for communications during disasters/emergencies was initiated by the public before emergency authorities start utilizing it. Apparently, the public wanted to find alternative ways to search and share updated information concerning the emergency . EROs now utilize social media to engage citizens in the emergency management by both disseminating information and accessing information from the public. According to Latonero , research on the use of social media during emergencies can be divided into two main categories: one that focuses on the ways in which EROs use social media to coordinate activities during their response to the event, and the other one that deals with the ways the public and victims share information on social media during emergencies. For examples, social media platforms were used to link the public with day-to-day, real-time information in preparation to the 2009H1N1 pandemic. A few minutes after the Alexandria, Virginia health department tweeted regarding availability and location of vaccines, people rushed to the vaccination sites . This presents that an integration of social media platforms for preparedness activities can facilitate an effective response from EROs as well as the citizens by using familiar platforms during an event . Since the 2010 earthquake in Haiti, EROs around the world have adopted social media as an important additional communication channel to communicate with the public . --- THE STUDY EVENT Being the world's sixth largest country by area, Australia has got its share of natural disasters. It has a long and dreadful history of natural disasters such as bushfires, floods, severe storms, and landslides . In recent years, Australian government agencies have shown a significant interest in the use of social media, particularly Twitter, for interaction with general public during emergency response . The growth of Twitter users in Australia resembles the growth of Twitter users in many other countries including the United States . Ehnis and Bunker found that Queensland Police Service used microblogging services to interact with public during the 2011 Queensland flood disaster. Being proactive, QPS created an online community of followers before the flooding occurred. QPS conducted an extensive trial use of media technologies -Facebook, Twitter and YouTube, in which they wanted to establish a new channel for a two-way communication and collaboration between QPS and the public. These social media services were used to disseminate information and warning out to their following communities and general public. The "likes" and comments from the community indicated that the community did not only read information, but also seek interaction with the serving agencies with offer of help and assistance. But Ehnis and Bunker concluded it is still unclear that if the presence of government institutions on social media platform was effective in recent disasters. In February 2014, Victoria confronted its worst bushfires since 2009 Black Saturday. A series of blazes, caused by the lightning strikes lit up the state near the end of January. The most serious bursts were in and around Melbourne in the first week of February, which destroyed three houses in an intense blaze at Warrandyte on the city's north eastern peripheral . While the bushfire failed to affect power generation directly, around 12,000 Victorian homes suffered outages due to spikes in demand and damage to power lines. Fires particularly at Mickleham and Warrandyte moved fast with the wind change early in the afternoon, opening up new and wider fronts. More than 350 fire fighters and 60 trucks were deployed to battle the fire in Mickleham and Warrandyte, whereas a further 126 trucks fought the 3000-hectare fire in Gisborne and nearby Riddells Creek. According to the Country Fire Authority's announcement the fires burning near Warrandyte, in Melbourne's outer North East, and near Gisborne, North West of the city were eased by 17 of Feb . No one was killed or seriously injured during the Melbourne fire, but many animals were among the casualties of the 333,000-hectare fires1. In this event, the emergency authorities and the general public heavily used Twitter to exchange information. Emergency management organizations used Twitter platform to provide up to minute information to the people whereas the individuals and social communities used Twitter to learn and forward that information by re-tweeting. In the 13 days of the fires, both emergency authorities and people on the ground posted around 7,981 tweets about these fires. --- METHODOLOGY AND DATA COLLECTION Analysing tweets, re-tweets, and mentions is a common practice in the majority of the studies on the use of Twitter . For example Simon et al. investigated tweeting, re-tweeting and mentioning of government officials and security forces accounts during a terrorist attack in a shopping mall in Kenya. Such analysis helps to understand how Twitter has been used by various stakeholders such as general public, volunteers, media, emergency response organizations and so forth. We used R with twitteR, tm, and sna packages which have also been previously used in the literature , for the collection, storage and analysis of Twitter data on Victoria fire. R, as an open source software environment for statistical computing and visualization, is used in conjunction with a variety of packages for improved, collection, analysis and storage of data in various areas of research such as epidemiological , bioinformatics , environmental statistics, economics, medical and public health application.  The R package 'twitteR' 2 is an R based Twitter client which provides an interface to the Twitter web AP, for the collection and storage of Twitter data. It has been recognized as a simple and practical way for retrieving data from Twitter. It captures public tweets, trending topics and tweets containing a given hashtag, words, and user names. After collecting the desired tweets, we extracted their contents by using function twListToDF that puts everything in the data frame.  R package 'tm' has also been used to perform text mining. The structure for managing documents in tm is called Corpus referring to a collection of text documents.  The R package 'sna' is based on network theory for the purpose of analysing social networks consisting of nodes representing individual actors within the network. Our first step in relation to data collection was to establish a secure and authentic connection with Twitter by performing handshake procedures, which includes using 'ROAuth' package with 'twitteR' package to setup credentials in the form of consumer key and secret. Once the connection was completed, the next step was to access data by using twitterR. The crawling and data collection occurred between 7 and 14 Feb 2014, which was the peak time period of the fire event, and we were able to extract 7,981 tweets created between 20 Jan and 14 Feb 2014. We used 'searchTwitter' function of the 'twitterR' package to search and download the tweets, based on the relevant hashtags and the accounts of many Australian EROs involved in the response to the event. In addition, information about individual users as well as communities and government emergency users' accounts relevant to the fire event were also captured. Our preliminary investigation into Twitter posts identified a number of terms and hashtags related to the fires. It included 'victoria bushfire', 'bush fire #vicfire', '#firevic' '#firewatch' and '#southmelbourne'. We used 'victoria bushfire', '#Vicfire' and '#firevic' to extract tweets specific to the fire and used by both the public and fire authorities to provide and exchange information. Accounts belonged to Australian emergency authorities were considered formal and valid representatives of state and national level government. Therefore, tweets posted by these organizations were considered valuable having impact on the population. As outlined in the following section, a social network analysis was then conducted on the data to understand the activeness of the EROs and their influence on the followers during the event. 1 http://www.sbs.com.au/news/article/2014/02/09/no-let-victorias-fire-emergency 2 http://cran.r-project.org/web/packages/twitteR/index.html --- RESULTS --- Demographics findings Table 1 shows the list of top EROs involved in the 2014 Victorian bushfire. These EROs have joined Twitter as early as 2008, while some others have joined later in 2011 and 2012. The results indicate that all EROs have actively been sharing fire related information with the communities. As evident in Table 1, all ERO accounts have posted a large number of tweets since the creation of their accounts, with @Firewatch_Melb and @Australianwarni posted the highest number of tweets since their establishment. Table 1 also indicates that the information provided by the EROs through tweets is trusted by the individuals, as EROs' Twitter accounts have thousands of followers. There is a considerable variation among these accounts on followers and favourites. For example, @Firewatch_Melb and @Australianwarni accounts, which posted the highest number of tweets every month , have 1,014 and 1,704 followers respectively but the number of tweets that were declared favorites have been only 15 and 2 respectively. In comparison, @CFA_Updates and @MFB_News accounts have attracted a much higher number of followers , and 550 and 833 tweets respectively have been considered favorite by the people since the activation of these accounts. Surprisingly, these results indicate that older Twitter accounts have fewer posts every month yet with more favorites compared to the newer accounts, which have a higher number of postings every month but with a lesser number of favorites. Analysis of the activities of EROs and individual Twitter account holders during the 2014 Victoria fire revealed that altogether 2,685 Twitter accounts were involved in disseminating the information by posting 7,981 tweets during the fire event between the 20 th of January to the 14 th of February in 2014. This means, on average, each account holder posted approximately three tweets in relation to the event. Further analysis into the frequency of the tweets, as shown in Table 2, revealed that 1,629 users had posted single tweet, and only 16 users posted 40 tweets or more about this event. --- Geo-location information Geo-location information referring to street addresses, city names and country names of the tweets, was the next valuable information that was retrieved and analysed in this study. Geo-location information generally helps EROs and general public to assess their own situation as well as the overall situation in the area during a natural hazard . In addition, it helps authorities and emergency managers to assess validity of information posted and also to create virtual communities in order to provide more targeted information in the wake of such natural hazards . Geo-location can be identified either if the user have directly made it available with the tweets or can be deduced from IP addresses using any of the IP geolocation solution . In this study, we focused on geo-location information that was provided either directly by the user or through the client application. The analysis of the tweets in this study revealed the geo-location information of only 846 tweets, which is nearly 11% of the total number of tweets. Out of 846 tweets with available geo-location information attached, 52 were from outside Australia. Other tweets were originated within the 40 KM radius of the Melbourne City. It is worth mentioning that Firewatch Incident Feeds was a source of 737 tweets out of 846 geo-location information enabled tweets. Twitter for iPhone and Android were the source of 52 and 30 tweets respectively which was followed by Instagram that sourced 19 tweets. The rest of the five sources posted 2 tweets at maximum in relation to this fire hazard. Thus, we did not find a great percentage of geo-location enabled tweets in this case study. Past studies i.e. Krishnamurthy et al. and Crooks et al. , have also found that providing geo-location information is not a common practice in the areas where latest mobile technologies are easily and rapidly adopted. --- Institutional Vs. Non-Institutional Contributions Content analysis of tweets collected in this study revealed that 3,579 tweets of the EROs were re-tweeted by 444 users between the 7 th to 9 th of February 2014. These re-tweets were about 45% of the total number of tweets, indicating a high level of influence of the institutional EROs on their followers. This is an overwhelming result indicating the enthusiasm of the Twitter users in spreading information coming from the EROs. For example, 53 tweets from @CFA_Updates were re-tweeted 501 times. The above finding also shows that about 55% of all tweets were from accounts other than EROs. Figure 1 illustrates a social network of the re-tweeting behaviour of the users. The nodes of the graph are users and a link between each pair of nodes exists if any one of the users has re-tweeted the other user's tweet. The graph shows reputable sources of tweets and further re-tweeting of the tweets from such as CFA_Updates, ABCemergency, CFAAlerts and Australianwarni during the Victoria fire event. A closer look into the dense areas of the graph revealed that the majority of the tweets from CFA-Updates and Australianwarni went on more than six hops in re-tweeting; however tweets from other sources could not go beyond four hops in re-tweeting the information from sources such as CFAAlert and ABCemergency. The propagation graph also shows cycles at various places indicating that the information was commented, replied and passed on to others. As this Table shows, about 75% of total tweets have been posted by institutional EROs; however there is a considerable variation among the number of tweeting, retweeting and mentioning of these accounts in their tweets. For example, @Firewatch_Melb and @Australianwarni were the most active ERO accounts during the event, which posted 701 and 260 tweets respectively. On the other side, @MFB_News and @NSWRFS were the least active accounts, which posted 50 and 41 tweets during the event. This variation can be explained by the fact that since the fire occurred in the outskirts of Melbourne, @Firewatch_Melb and @Australianwarni were the most responsible Twitter accounts in spreading fire related information. The @NSWRFS generally covers incidents from NSW, Victoria's neighbour state, and therefore they have been shown less active in relation to the Victoria fire. Figure 2 also compares the number of 'Mentions' for institutional versus non-institutional accounts. As a common function in micrblogging services such as Twitter, Mention enables interactive postings by drawing attentions of other users . By mentioning users in a tweet, they receive notifications and possible retweeting by them may initiate a large cascade diffusion of the tweet. Mention can help users to improve the visibility of their tweets and expand their horizon of social interaction beyond their immediate reach . As an important interactive behaviour, Mention allows to actively direct a tweet to target users using the form of @username . Mentioning others in the tweets can also be viewed as an efficient way to pull interactions instead of push . Therefore, instead of waiting passively for retweets after postings, Mention can actively initiate interactions at the time of the postings . Amongst all, three accounts had the highest number of Mentions: @CFSAlerts, @CFSAlerts, and @geehall, two of which are EROs and one is a digital volunteer. However, as Figure 2 shows, the total number of institutional Mentions is significantly higher than those of non-institutional ones. This finding suggests that people affected by this disaster have been and aware of EROs' Twitter account names and have actually used the information posted by these organizations, and they trusted the information posted by EROs since they mentioned EROs account names in their following tweets or re-tweets. --- Figure 2: institutional vs. non-institutional information dissemination contributions On the other hand, non-institutional actors have also played a significant role in information dissemination, with about 25% of all tweets were posted by them. As Figure 2 shows, while the total of number of tweets posted by non-institutional is less than EROs, the level of their re-tweets is significantly higher. This has important implications, as it reflects the community members' strong willingness to trust and share active individual Twitter account holders/social influencers' messages during a natural disaster. This is consistent with findings of other studies, as for example Cha et al. found that a high percentage of re-tweeting of tweets is an indicator of the level of influence of the users on their followers. In other words, the followers consider such a user a trusted source and regard the information posted by them valuable, notable and informative Table 2 also shows a considerable variation among institutions' number of tweets and their re-tweets. While some EROs' tweets have achieved a higher level of re-tweets, others have performed the quiet opposite. For the example, tweets from @Firewatch_Melb were never retweeted by the other accounts. The tweets from @Australianwarni were retweeted only 40 times in relation to this fire, which is a small percentage of the total number of tweets posted by that account. Interestingly, 170 tweets from @incident_alert, were retweeted 335 times . The @geatozgovtweet was one of the least active accounts during the event, yet 54 of their tweets were retweeted 611 times, achieving the highest percentage in retweeting. Similar observations have been made for the other less active accounts. For example, 88 tweets from CFSAlerts were retweeted 146 times achieving a high percentage in retweeting frequency . The least active accounts such as @MFB_News and @NSWRFS have also shown a relatively high frequency rate for retweeting. Furthermore, we found that the content of the tweets as well as the hashtags that EROs used played an important role in the total number of re-tweets. This means that tweets posted by government emergency organisations who covered the event from various perspectives and posted relevant contents were very attractive to community members. Also tweets from more appropriate hashtages have been retweeted more than the others. Similar observation has been made for the mentioning of the accounts. Similar to the pattern of re-tweeting, mentioning of very active accounts was less for the less active accounts as shown in Table 2. For example, @firewatch_Melb and @Australianwarni accounts that had tweeted 701 and 260 times were mentioned 85% and 15% respectively. Some of the medium level active accounts such as @incident_alert, @CFStalks and @CFSalerts have been mentioned at a high rate of 91%, 58% and 172% respectively against their total number of tweets. Less active accounts such as @incident_alert16, @MFB_News and @NSWRFS have been mentioned at considerable rates, 49%, 72% and 90% respectively in the tweets from other accounts. The variation in tweeting, re-tweeting and mentioning of ERO accounts can be due to various reasons. For example, since the fire occurred in the outskirts of Melbourne, @firewatch_Melb disseminated information more than the other ERO accounts. However, this does not mean that this account achieved a high number of retweeting and mentioning in the tweets from other people. Joining Twitter early in 2008 and 2009 and building trust among the communities can be among the reasons for some ERO accounts such as @CFA_updates, @incident_alert and @MFB_News to have their posts retweeted and mentioned more frequently than others. In addition to some EROs, social media influencers, volunteers, and general public supporting communities also remained active on Twitter throughout the event. Our results revealed that these individual Twitter account holders have played a crucial role in the development of informed communities. For example, @geehall1 tweeted that "Murray Valley Hwy Ebden and Huon , NOT Yet Under Control", which was later twitter by @ABCemergency, a TV media outlet, about the situation in the following way "Halls Gap #VIC residents advised to leave their homes ahead of wind change today". Our findings indicate that re-tweeting and mentioning of their postings have been highly frequent by the concerned communities because of the coverage of the event at a wider level and using appropriate hashtags related to the event. --- Tweet contents: informative rather than directive Altogether 1,566 tweets were posted by the selected 16 accounts in Table 2. The majority of the tweets, particularly from EROs, explain the situation and what is happening on the ground. For example, @CFA_updates tweeted stating that "@theheraldsun: #VICFires: It's not over yet. #Melbourne wakes to smell of smoke as fires continue". Another tweet from @CFA-Updates informed the communities as "North Warrandyte fires now marked as under control -great work by local crews. Warning will be updated shortly #vicfires". However, such tweets were informative rather than directive. They did not provide directions in terms of what needs to be done in a particular situation for the safety of individuals and community members. Analysis of tweets revealed that the general public had shown their concern over the provision of limited information by the EROs. For example, a tweet from a citizen states that "It's scary when a cop knocks on your door & says "Fires are bad. You better pack your stuff & leave". Another citizen tweeted stating that "No luck escaping the smoke from #vicfires Still horrible here. #whereamiworking Phillip Island." A relatively high number of Mentions in Table 2 suggest that there is a considerable potential for the public to receive more directive information and guidance. Particularly, EROs have emphasised on the use of appropriate #tags for streamlining the spreading of the fire related information. For example, one of the tweets posted by CFA_Updates is "@rexster: To all Vic tweeters, the #tag being used by @CFA_Updates and others is #firevic not #vicfires pls RT and use for bushfire tweet". In this tweet, they appear to be instructing the Victorian public to retweet their postings with hashtag #firevic not #vicfires. Our findings show that determining an appropriate hashtag for the fire incident was challenging for the public. Analysis of the data also reveals that numerous hashtags were used in communicating this fire event, which can be categorised into three groups: the general level, state level, and local level. The most used general level hashtags to represent this fire event were #bushfire, #firewatch and #bush. However, the state level hashtags included #vicfires, #firevic and #victoria. These hashtags existed and used on twitter prior to this event. People used hashtags such as #southmelbourne, #campbelfield, #fishermansbend, #epping, #Oakpark and many others referring to the status of the fire at the local level. Thus, the communities used a variety of hashtags on twitter in relation to this fire. However, fire authorities preferred using #firevic and requested people to use this hashtag in their postings in relation to the fire event. --- DISCUSSION --- Disaster Information Dissemination Power Share Findings of this study revealed that while several Australian EROs have well-established twitter accounts and actively use them during disasters, a large portion of news dissemination activities on social media happens through non-institutional outlets and individual twitter account holders. This challenges traditional assumptions of the theories like World System Theory that assume information flows from large news outlets to smaller units. As shown in Figure 3, we propose a power share between institutional and non-institutional social media outlets during disaster events, which in turn calls for a more effective coordination between institutional and non-institutional . Re-tweeting 45% of the tweets by EROs indicate that EROs had strong influence on their followers during the event and that the followers listened the instructions by the trustworthy EROs and re-tweeted the information, which went on many hops creating a social network analysis, as shown in Table 2. However, the power of non-institutional and digital volunteers becomes more apparent when the number of re-tweets for non-institutional and institutional accounts are compared for the 2014 Victorian bush fire. As shown in Figure 2, total of number of tweets by EROs are clearly more than the tweets from noninstitutional account holders, whereas they are quite the opposite in re-tweeting. On the one hand, the results of this study confirm that that the role of EROs is critical in leading the communication among various stakeholders during natural disasters. While social media typically has the organic, groundswell stereotype as it relates to content generation and dissemination , we found that formal institutions and hierarchies appear to maintain a sense of credibility and trust when social media users are searching for information concerning their personal safety during disasters. As Table 1 indicates, Australian EROs have overwhelmingly realised the importance of establishing Twitter accounts, and that the newer ERO accounts are more active than the older ones in posting messages during natural hazards. The results provided in Table 1 also suggest that the older accounts have a greater number of followers and favourites --- Institutional and EROs --- Non-Institutional and Digital Voluneers Disaster Community Social Media Information Dissemination --- Use disaster information for their postings, which may mean an early embark on twitter has helped some EROs to win the trust of the communities over newer EROs. With more than 2.8 million active users in Australia, presence on Twitter platform has essentially become a need for EROs to communicate with the communities during natural disasters/hazards . On the other hand, the findings of this study also revealed that almost 50% of all messages exchanged on Twitter about 2014 Victorian bush fire were initiated by non-EROs and non-institutional account holders. This is consistent with some other studies in the literature suggesting that the general public is the main player in communicating the events related information on social media . As table 2 presents, accounts such as @geehall1 and @neighbourday are volunteers, actively posted information about this event, and also had their posts re-twitted on a very large scale. Digital volunteering is a recognized phenomenon in the context of social media. Starbird et al. considers digital volunteers individuals or groups who predominantly monitor incoming digital feeds to find new, relevant, and actionable information . Cobb et al. have recognized the importance of processing real-time and firsthand information from the members of a disaster-affected-community for a better decision making and designing strategies. Digital volunteers often work to treat the social media data into useable resources. Cobbs et al. conducted contextual interview with digital volunteers and emergency managers to provide insights into their collaboration and the use of tools for monitoring disasters. The results of their study highlight the importance of digital volunteers' impact on design implications of support systems that are used in coordinating and integrating disaster management activities. --- Institutional/non-institutional coordination for information dissemination Further analysis of the tweet data indicated that there was peak and off peak time of the tweets by EROs. There were hours of the day when more than 150 tweets were posted whereas in other hours only a couple tweets were posted about the event. This great variation in the frequency of tweets indicates that EROs may not have allocated sufficient resources to conduct consistent communication around the clock. Extremely low tweeting rates in particular hours, or in other words less activeness from EROs in particular hours could have created opportunities for people to spread suspicious information or rumours . Therefore, EROs need to take an active role in consistent communication with the disaster affected community as well as with active digital volunteers that post and share disaster information on social media. This specially becomes important, as a relatively higher number of Mentions suggest that people trust the information posted by EROs, take appropriate actions accordingly, and forward the corresponding messages to other affected people in the community. Furthermore, the contents of most postings were informative rather directive for the affected communities. This means tweet posts were mainly about updating the communities about the fire situation on the ground, and less about directing the community members with what actions they need to perform for their safety. Safety of the communities is the mission of Australian EROs and how social media can be used to support the safety of the communities is still a challenging task for the EROs . Our findings suggest that pointing to useful resources under a particular event condition can be helpful for the communities to enhance their safety. To point to the right resource promptly, EROs might have to establish communication links with other support agencies such as Red Cross and Salvation Army during the disasters as well as active digital volunteers/Twitter influencers. The above finding becomes especially important as the information posted by the non-institutional and individual Twitter accounts may sometimes be unreliable, leading to rumours among the communities . Rumours and suspicious information can be neutralised if EROs play an active role on social media during extreme events. It is evident from the results of this study that the active role played by the EROs during the Victorian fire event had helped to build public trust on EROs. The information that came from EROs on the fire event was spread by the public based on instructions provided by the EROs. Thus, development of a closer and more trustful communication system between the EROs and active Twitter influencers can significantly help to reduce rumours about the event. --- CONCLUSION AND RECOMMENDATION FOR FUTURE STUDIES To the best of our knowledge, this is the first study that has distinguished the use of Twitter by formal institutions from non-institutional during a natural disaster. This study primarily analysed the services provided by major Australian EROs as well as active individual account holders through a social media platform, Twitter, during a fire event in 2014. The results of this study showed EROs' strong and active presence at social media, particularly at Twitter. This has helped them to play a leading role in communicating with their followers on the fire event, which has been evidenced by a high level of posted tweets. In comparison, non-institutional account holders have often posted a larger number of shares and re-tweets than EROs. This in turn reveals the high influence that noninstitutional channels play in disaster information dissemination during a natural event. Thus, future research is needed to further examine frameworks or mechanism for a more effective coordination or collaboration between institutional versus non-institutional social media accounts for dissemination of disaster information. Moreover, future studies should investigate why non-institutional messages may get more viral than some EROs. Research is needed into understanding factors that may influence share-ability of institutional vs non-institutional warnings during a disaster. Another important result of this study was that the ERO's tweets were primarily used to inform affected people about the status of the disaster rather directing them to take particular actions, even when such tweets came from institutions invested with the power to direct. This could be because EORs may consider Twitter as a tool for information dissemination than a channel for giving specific directions to the people who may need different advice in different circumstances. However, past studies in the use of social media in natural disasters have emphasized on the potentials of Twitter and social media for supporting official communications and reflecting ground level conditions . Thus, future research is needed to investigate on EROs' perception and intention of using social media channels, and Twitter in particular, during disasters, and what protocols they may or may not have for using these tools for the purpose of providing directions and official advice. Furthermore, while social media platforms work very well in broadcasting trustworthy information , they are also effective in spreading baseless rumours which can contribute to the chaos in the affected areas . Yates and Paquette have questioned the credibility of some social media feeds during natural disasters. They argue that during a natural disaster and when information from official sources is scarce, rumours can be spread on social media contributing to the chaos on the ground. Popoola discussed that users generally have difficulty discerning truthfulness of tweets based on their contents. To develop a deeper understanding of the difference between valid news and rumours, Mendoza et al collected 4,727,524 tweets on Chilean earthquake from February 27 to March 2 in 2010 and conducted two studies to investigate how the news and rumours propagate through networks, and the ability of the network to discriminate between false rumours and confirmed news. Their results postulated that the propagation of tweets that correspond to rumours differs from tweets that spread news in a way that false rumours are questioned much more than the confirmed truths by the users ). From this perspective, it appears that noninstitutional and less formal Twitter account holders may act as a collaborative filter of information that does not allow rumours to penetrate deep in the social graph. Future research is therefore needed to deepen our understanding on how to distinguish rumours from trustworthy news during a disaster, and that how institutional and non-institutional people can work together to avoid or control spreading false information into the community. More research is also needed to study the integration of general public's tweets into institutional applications, which in turn may drive innovation in services and communication with the public. Rosenberger et al. investigated the use of social media platforms such as Twitter by institutional organizations, and found that linking such platforms with their internal business applications can lead to various benefits, including transparency in actions, improving citizens' public participation, and improvement in services. Lastly, our findings showed that while most of EROs and active digital volunteers posted geo-enabled tweets, only a small percentage of general public shared geo-enabled tweets. For example, Firewatch Incident Feed alone was the source of 87.1% of the geo-enabled tweets. With respect to the general public, the results are consistent with the results of past studies on geo-location such as Crooks et al. and Krishnamurthy et al. suggest that general public does not consider posting geo-enabled tweets during extreme events. Geolocation information referring to street addresses, city names and country names of the tweets is a valuable information for EROs and general public to assess their own situation as well as the overall situation in the area during a natural disaster/hazard . In addition, it helps EROs to create virtual communities in order to provide more targeted information in the wake of such events . Further research is thus needed to investigate whether and how users can be motivated for using using geo-location enabled tweets during a disaster, and in what ways geo-location enabled tweets may further assist EROs in supporting the disaster affected community. --- Authors' Biography Dr Babak Abedin holds a PhD in Information Systems from the University of New South Wales. His research focus is on how social information systems and online communities can empower individuals and transform organizations. He has widely published in this domain, most recently in Journal of the Association for Information Science and Technology, Journal of the American Medical Informatics Association, Interactive Learning Environment. Dr Abdul Babar is an academic researcher at Sydney University, Sydney. He has extensive industry and research experience in business strategy analysis & design and its translation into IS development encompassing telecom, retail and banking industry projects. With the strategic view of IS development, Dr Abdul Babar is currently focused on industry related research projects in the area of disaster management, social media and IS outsourcing
Social media plays a significant role in rapid propagation of information when disasters occur. Among the four phases of disaster management life cycle: prevention, preparedness, response, and recovery, this paper focuses on the use of social media during the response phase. It empirically examines the use of microblogging platforms by Emergency Response Organisations (EROs) during extreme natural events, and distinguishes the use of Twitter by EROs from digital volunteers during a fire hazard occurred in Australia state of Victoria in early February 2014. We analysed 7,982 tweets on this event. While traditionally theories such as World System Theory and Institutional Theory focus on the role of powerful institutional information outlets, we found that platforms like Twitter challenge such notion by sharing the power between large institutional (e.g. EROs) and smaller non-institutional players (e.g. digital volunteers) in the dissemination of disaster information. Our results highlight that both large EROs and individual digital volunteers proactively used Twitter to disseminate and distribute fire related information. We also found that the contents of tweets were more informative than directive, and that while the total number of messages posted by top EROs were more than the non-institutional ones, whereas non-institutions exceeded on tweets and sharing of the tweets.
Introduction Urban inequality is a well discussed multidisciplinary study topic with a vast literature [1][2][3], many times associated with space analysis [4,5], since the physical distances and unequal distribution of opportunities in the urban tissue are often indicators of social misbalance. The increased concern about inequality stimulates research around the globe. It is already clear that in the Global South, inequalities of income and social justice are often more pronounced than in the Global North. Even though the Global South faces high levels of poverty, the inequality is not only merely socio-economic-related, since there is a cycle of production and reproduction of inequality, many times associated with power and the threat to social contracts that underpin societies' democracy [6]. Researchers from the Global South discuss inequality from a point of view of the southern reality. With this considered, theories produced away from the local reality or based on the Global North's situation will have little explanatory power to many of the world's realities [6]. Henceforward, it is important to build conceptual thinking closer to the real world, especially considering the different ways of looking at and living in the Global South. Inequality is also related with the concept of vulnerability, which emerged in the literature to take a step forward from the concept of poverty that had proved insufficient [7]. In this article, the vulnerability concept is considered, since it is a state of high exposure to risks and uncertainties, together with a reduced ability to fight those issues or to cope with their negative consequences [8][9][10]. Inequality is particularly related with the history of cities and their social groups, power disputes and individual thinking. Similarly, social practices in vulnerability contexts are also related with the historical, economic and social context [11]. They are also linked to culture and ideology. Thus, financial globalization has also generated more spatial and social polarization since the start of this century, sometimes related with migrations [12,13], economic crisis scenarios [3,4] and neoliberal city production models [14,15]. All of those elements are relevant challenges for Latin American countries [16,17]. Therefore, urban vulnerability is a complex issue that reveals the need to adapt public policies that can take a step forward to stimulate change. Although vulnerability and urban inequality have been studied from many different perspectives, a zoomed-in analysis with daily life and social practices related to vulnerability is sometimes missing. Accordingly, studies from many countries have been developed considering the relationship between quality, comfort and the sustainability of social housing units [18][19][20][21], but not much is said about the open spaces in these areas. In response to rapid urbanization since the 1960s, the production of social housing blocks has been common in many countries. Since then, many buildings have been built as part of mass housing projects. Often, open spaces were not designed and tended to be neglected in these housing projects, which were mostly designed as leftover spaces. A succession of buildings was often associated with a 'no neighbors' experience, as the streets were transformed by the gates and walls of the buildings. This was the case in many countries, such as Brazil [22,23], Chile [22,24], Mexico [25], Peru [26] and Ecuador [27]. Latin American countries have some peculiarities when it comes to social housing policies. In Brazil and Chile, since the military dictatorship periods, social housing policies have been developed with a view to mass production. In Chile, social housing has been developed with neoliberal programs since the 1970s. In Brazil, the neoliberal policy perspective began in 2009. For both, the challenge is to move from quantitative to qualitative housing production while responding to the growing housing deficit. The challenges of social housing are not unique to Latin America. In Korea, for example, where more than half of the population lives in apartments, the highest buildings seem to have a higher rate of social pathologies, which could be linked to, among other things, the presence of fewer open spaces. A similar issue also appears in Japan [28,29]. In order to respond to the challenges of the growing population in Korea and Japan and also to the quality of housing, researchers are discussing other models of housing arrangements with the inclusion of small courtyards [28,30]. However, in terms of the interactional environment, courtyards or similar private open spaces do not represent a complete social practice, because the interaction is limited to the already known users of the space, without surprises that can embody complete social relations. This article presents new concepts for discussing urban social space, called "social landscape", "peripheral inclusion" and "un-practice". These concepts are based on the analysis of neighborhoods with a high number of social housing buildings in South America. This was only possible through the observation of daily life in neighborhoods where social housing is concentrated in the Brazilian Metropolitan Region of São Paulo-SP and the Chilean city of Santiago, from 2013 to 2017 [22]. The choice of analysis for both countries was mainly due to the creation of the "Minha Casa Minha Vida" Brazilian housing program in 2009, inspired by Chilean neoliberal housing policies [23,24,31]. These policies accentuated the creation of social housing neighborhoods in areas of urban expansion, with very striking and similar characteristics, maintaining the construction of concentrated housing blocks in a condominium model as a way of making social housing. However, the question that arises is this: would it not be the time for this productive logic to be changed, turning it into more appropriate solutions for the daily lives of families and cities? The answer to this question stays in questioning the condominium model for social housing and focusing on open spaces and public areas to stimulate social practices. Housing policies, mainly influenced by mass production, have meant urban impacts and also impacts on the daily lives of families. Exclusion situations, lack of identification with the neighborhood and neighbors, fears and concerns, are issues that were observed in Chile and Brazil. Those issues coincide so that social practices happen mainly inside the home or in reduced and controlled living spaces, and not in collective and public spaces. Chile has developed interesting neighborhood programs in an attempt to minimize the impact of the neoliberal production of social housing. Even if they are not yet able to change the overall picture of the inequality scenario, it is a process of paradigm change and a shift from massive housing production to habitat production [22]. However, despite the progress with neighborhood programs, Chile still follows the condominium model, called co-ownership, for the social housing architecture. The same is the case in Brazil. The condominium model for social housing also increases this lack of identification with the living areas and the prioritization of individual social practices. This model appears as a solution for housing policies in both countries, being present mainly in metropolitan regions in the form of housing blocks. It was found [22,32] that this model has a great impact on open space social practices, as the differences between the self and the other are accentuated. Therefore, social relations are limited by walls, rules and similar economical characteristics in the condominium models. This limitation, verified in both countries, led to the creation of the concept of un-practice, which represents an incomplete social practice. This article is organized into three sections that explore the concepts of social landscape, peripheral inclusion and un-practice. These key topics are important to understand the social practices in vulnerable urban spaces. The first concept, social landscape, states that the landscape should be analyzed through its interconnected social dimensions. The open space system has a great importance for citizens: it can be the space of forests and other green areas with a relevant contribution to the environment, but it is also the space of parks, squares, paths and streets. All together contribute to social relations. Despite its relevance, open spaces are often disregarded in social housing policies, which mostly focus on architecture and sometimes on the urban context. This study aims to fill this gap in the literature concerning landscape concepts for the transformation of social housing spaces. It seeks to demonstrate the importance of considering open spaces in social housing policies. In this regard, the second concept, peripheral inclusion, gives a new approach to the well-known concept of social exclusion [33,34]. The latter is related to the challenge for vulnerable social groups to overcome the context of vulnerability. However, exclusion is a word that indicates that those groups are not part of the economic cycle. As matter of fact, they are part of the global economy, nevertheless located in the peripheral area of it [22]. The third concept, un-practice, arises from the limitation of social practices: on the one hand, there is the transforming potential of open spaces through daily appropriation, which surpasses everyday life. On the other hand, however, there is the socioeconomic and cultural context, associated with subjectivity and individual conduct, which makes it difficult to overcome the alienated daily life. As a result, social practice is limited, incomplete, i.e., un-practiced. The concepts of peripheral inclusion and un-practice are related. Both are equally situated within the larger concept of the social landscape. Spatially, social differences become visible in the urban space of cities through the logic and politics of land use. There is a paradoxical relationship between inclusion and the invisibility of difference. In other words, social differences coexist in urban space within the social and economic complexity of populations, but are distanced by society's fear and indifference towards socio-economic-spatial discrepancies. It is in this absence of differences that the un-practice occurs, with the closure of the complete social experience. In this sense, the concept of un-practice is not without peripheral social inclusion, and both depend on an expanded view of the social landscape to be understood. The original contribution of this article lies in this conceptual analysis, which has been specifically designed to address the realities of social relations in the vulnerable urban spaces of Latin America. Although the concepts are based on the observation of Latin American realities, the results provide recommendations that may be suitable for the Global South and North discussion on how to create a better quality of life in cities with high vulnerability. The recommendations reveal the complexity of daily life in the context of vulnerable urban areas and provide guidelines for implementing neighborhood policies that integrate open space design with housing units. --- Methods and the Theoretical Background The method of these conceptual theories is bibliographical research and systematic observation with overt, covert and non-participant methodology [35]. This means that the study was developed with observation of the daily life of participants with the support of some members of the social group. It intended to avoid any kind of influence on the behavior of the local community, to capture the essence of daily life. To support the observation method, some questions were posed to the members of the social group that were aware of the researcher's presence. The observation was carried out during PhD. research in two countries, Brazil and Chile. The research analyzed social housing buildings in neighborhoods where social housing was concentrated in the Metropolitan Region of São Paulo and in Santiago, from 2013 to 2017. In Santiago, case studies were conducted in the municipalities of Bajos de Mena, Santa Adriana and Cerro Navia. In Brazil, some housing condominiums of the "Minha Casa Minha Vida" program were analyzed in the Cidade Tiradentes neighborhood and also in Guarulhos, a city in the São Paulo metropolitan area [22]. For the case studies, the spatial syntax method was used to understand the spatial configuration, urban morphology and their relation to the social practices of the people [36,37]. This method was used to study the exterior spaces of the social housing blocks especially, as well as the neighborhood streets. Spatial syntax studies have shown that places that are more accessible in spatial configuration are generally and potentially the spaces where more interaction between people takes place [38,39]. Considering the theoretical background of the analysis, some authors in the fields of psychology and psychoanalysis were key to this work: Carolina Besoain [40], a Chilean psychologist, who reflects on the subjectivity that exists in the processes of acquiring a house; and Christian Dunker [41], a Brazilian psychoanalyst, who addresses the psychoanalytic aspect of condominium life. Both deal with strangeness in relation to the other, which explains the subjectivity existing in social practices in open spaces. The theoretical background also crosses the field of sociology, based on the work of Bourdieu [42,43], who places social genesis in the structure of relationships, guided by mechanisms of domination. Although in another context, Bourdieu's construction is also anchored in subjectivity, since individual behaviors in his analysis are dependent on a system of relationships. His concept of habitus deals with the domination and struggle of social groups that unconsciously follow certain individual and collective behaviors. The Latin term habitus originates from the Aristotelian notion of hexis, which, in turn, designates the set of dispositions of agents in which practices become the principle that generates new practices [44]. These dispositions are organized in systems and regulated by a socially structured ambience, that structure and are structured, being the principle and product of the agents' practices, perceptions and actions, a "habitual state" [43]. This structured and structuring ambience can be both the physical and affective surroundings of social and class relations, which guide and determine social practices. For Bourdieu [43], social life can be analyzed both from the set of geographical conditions that define unequal individualization and the combination of social groups in specific fields, as well as through the analysis of territorial fields where different processes of local identification occur. In this way, social life happens spatially according to the productive forces of the relations of production and reproduction of agents. Daily life implies social relationships and networks. Daily social analysis is an exchange of knowledge between the observer and the observed, used to understand the practiced territory from all the agents who practice it. Goffman [45] analyzes everyday life from a theatrical view, in which all subjects are actors playing a role, or even a character, defined by the system and by the environment in which they find themselves and with which they interact. Although related to the Anglo-American society of the 1970s and with a framework focused on internal ambiences, many of Goffman's analyses can be applied to current external spaces, as they relate to the social rules defined and supported by the users themselves. Thus, for Goffman [45], the expressive component of social life is given by the impressions presented and received by the other, in a created game of representations that, in most cases, are falsely represented. This theatricality of everyday life is related to social reproduction, a process that is guaranteed by relations of domination with the unconscious of maintaining social structures, although with remote possibilities of escaping that same social structure. This reproduction guides practices and legitimizes conditions of domination, in a cyclical process without changing the pre-established condition. This process, for Bourdieu [42,43], is related to the habitus and the field structure that, although holding subjects in a preconceived reality, does not prevent the overcoming of their condition. The habitus, as a structured structure, is a social product, acquired in an innate way. As a structuring structure, it is a social producer, which operates unconsciously, guiding practices and the social space. As product and producer of the same story, incorporated as a system of dispositions, habitus works in relation to the social field and is part of the individual's conduct that translates itself in attitudes, manners and moral appraisals , retained and reproduced in social practices. There is a social habitus [42,43] that guides the way of acting and thinking about everyday life. This conduct is governed by a hegemonic cultural code that is often deeply hierarchical and elitist. As a result, the critical and political awareness of architects and urban planners is often unconsciously governed by an elitist codification, according to which it is imagined that a part of the population wishes to possess what other social groups have. It is the same relationship between yourself and the "other", when the "other" is only understood through a look at oneself. The greatest difficulty is to disconnect from this hegemonic universe that permeates the dialectic of the self and the "other", allowing ideas for landscape and urban planning to be carried out from new proposals and free from the bonds of the dominant cultural codification [46,47]. Specific social fields are analyzed as areas of socialization, in which agents, consciously or unconsciously, relate politically, economically, socially and symbolically from themes of specific interest. In a Bourdieu metaphor, the structure of the field is like that of a game, where each player has cards from different types of capital-economic, cultural, social and symbolic-which defines their strategic position [43]. Thus, social fields are defined based on areas of interest and class positions and are determined by historical factors in the formation of social life, being, therefore, contradictory, and marks of privilege of specific social agents. Hence, the relationship of domination between agents defines the social structure, considered as areas of socialization, in which agents, consciously or unconsciously, are related politically, economically, socially and symbolically from themes of specific interest. The habitus directs unconscious actions, originating from a position occupied within that social structure and from a conditioning that stimulates the reproduction of social circumstances, guiding actions from an unconscious internalization of social position, status, class, gender and ethnic origin, among other aspects. In this sense, all daily actions are socially situated. The habitus manifests itself in social relations, actions, sports practices, way of dressing and speaking and posture, among others. In relation to social analysis, the work of the Brazilian sociologist Ana Clara Torres Ribeiro [46,47] was also important. An interlocutor of Milton Santos, a well-known Brazilian researcher [48][49][50][51], she was the main reference for the reflection of daily practices in this research. Her work left a huge legacy on the construction of space, class struggles, conflicts, collective consciousness and the marks of processes in a territory and society. It is from these contributions of sociology, psychology and landscape that this article's logic about social practices and daily life in social housing was developed. --- Social Landscape Landscape can be analyzed from several social dimensions that interpenetrate, as it is an expression of society, revealing its customs and social characteristics. Thus, landscape is the dynamic result of the interaction between social processes-economic, cultural and political-and natural processes, that are in constant change [52,53]. Additionally, it is simultaneously a result and part of the processes that occur in it, expressing the desires and limitations of a society in modifying a territory for its activities. From the point of view of social practices, landscape planning for open space qualification has a great importance. Social practices can be directly associated with the availability and quality of open spaces, and it is in the unconscious everyday life [54,55] that action and discourse come together in the moment of human coexistence. Action and discourse are only manifested if there is a Public Sphere [56], in the sharing of actions between human beings together. Furthermore, it is together that the power of a social group is exacerbated against preestablished narratives. The everyday Sphere [56] is the closest to social life, and it is there that the possibility of disruption of alienated production and reproduction is outlined. The association of daily life with social life places it in a relationship with the totality of the social structure, which allows its perception as a "hidden face" [47] of social life compared to the domination structure. Open spaces [52] are all spaces without a roof or construction, regardless of if it is public or private space or if it has vegetation. Therefore, squares, parks, streets, backyards, vacant lots, forests, beaches and even agricultural areas [57] are open spaces of relevance to cities. All open spaces are interconnected in a complex system, which interrelate with other urban systems complementarily. It is not the physical and visual connection that is most relevant to the system, as these spaces have multiple roles, both in environmental and social issues. The Open Spaces System allows public interaction, the free movement of living beings and social interactions. This system may be due to specific planning or it may arise through spontaneous appropriation. Those spaces represent the largest percentage of area in cities and, regardless of the environmental/urban quality and aesthetics, they have the potential to welcome the Public Sphere, be the state for political protests, popular festivals and others, from the daily encounter with the "other" [47]. Precisely for this reason, open spaces should be the focus of social housing policies. This does not mean that they are not considered at the present moment in housing policies, but the emphasis has not been on generating open spaces for the daily practices of social groups, especially in the Brazilian case. According to Segovia [58], some common characteristics can be identified in social housing blocks, which can be observed in several Latin American contexts: peripheral location when built; disconnection between the urban design of the complex and the immediate surroundings; and higher density compared to the rest of the city. Considering these characteristics, it is assumed that residents are also disconnected, isolated from the city itself. The maintenance of social housing production with these characteristics also shows a disconnection between academic analyses and political and institutional actions, resulting in the absence of strategies to effectively apply them. Building habitats with articulated open spaces, public spaces and urban infrastructure and equipment, creating neighborhoods and urban continuities, is not yet a common practice in social housing projects in Latin America. --- Peripheral Inclusion The history of many Latin American countries' urbanization is directly related to the history of socio-spatial segregation. The urban privilege of the middle-and upper-income groups in Latin American cities is fraught with historical heritage, which arranges private interests above the collective. The differences between groups in the population are not limited to economic and social inequalities and access to better material living conditions. They are also the result of different levels of social resistance acquired from the history of inherited struggle. Thus, inhabitants of the same place do not always experience identical temporality, as they are unaware of these historical differences that are reproduced in social practice. This lack of knowledge, or even forgetfulness and denial, amplifies the risk of peripheral inclusion and resignation to social-spatial segregation. Peripheral inclusion is a concept that aims to overcome the idea of social exclusion. The "exclusion" term brings the false notion that the "other" has no power with his own action [47]. In fact, what occurs is peripheral inclusion, since the "excluded" are, in reality, part of the system, in a bitter paradox of maintaining inequalities. The wide use of the term "social exclusion" only seems to lament the social problems of socio-spatial differentiation without, in general, explaining the origin of the problem. Social groups said to be "excluded" from the system are actually included, contributing to the maintenance of low wages and high levels of surplus value extraction in our capitalist socio-spatial formation. These social groups disadvantaged by the system are not only a reserve army of labor, but also a product of the inequality in the distribution of wealth generated, that is, they are part of the economic and social system and, therefore, cannot be simply called "excluded". Thus, given the imprecision that the exclusion expression brings, many experts have discussed new ideas and concepts. Ribeiro [47], influenced by Milton Santos' concepts of "marginal inclusion" and "slow man", comments on the problem of the term "excluded": for her, this word implies that the "other" does not have power or critical awareness about overcoming the reality, which is not true. Maricato [59] states that the paradox between the underprivileged in the system, the patrimonial heritage, urban legislation and the power of classes or institutions, are parts of a "systematic contravention", which is the basis of the Brazilian urbanization pattern, according to which urban expansion and the expulsion of the population with fewer resources resulted in the growth of a hidden city. This invisible city is the one that is not seen and does not want to be seen, and includes, among others, families that live illegally. According to Martins [60], "excluded" and "exclusion" are terms used by society's beneficiaries, that is, those who are not included in the periphery. Urban expansion controlled by political and economic interests made the distortion between real demand and the interests that govern urban processes even more striking [61,62]. Thus, the reproduction of territories of peripheral inclusion is part of a cycle that produces and deepens economic and social differences, as well as situations of vulnerability. Exclusion, therefore, is not a circumstantial accident. The contradictions of everyday urban life constantly create situations of favoring and disfavoring, which are reactions of the system itself, with social groups participating in this contradictory cycle caused by social, political and economic processes. In this sense, using the notion of "excluded" is incorrect, as the less favored social groups are not outside the system, but peripherally included, in a perverse process that maintains inequality. --- The Need to Overcome the Condominium Model for Social Housing and the Concept of Un-Practice Since the Brazilian and Chilean military dictatorships, a modus operandi of producing social housing blocks using the condominium model has emerged. The idea was based on a simplification of the guidelines of the Athens Letter for modern architecture principles. Even if the simplification of this model was highly criticized by experts [22,31], it is still the pattern used for social housing in the Latin American context [22]. The condominium model for social housing has been used mainly in metropolitan regions in Latin America, due to the high cost of the urban soil and the necessity to optimize the architecture to answer the high demand of the housing deficit. The housing condominium is a realization of a housing ideal. This urban model produces a subjective security effect, which occurs because of the protective walls and also the coexistence between equals, that is, by social groups with similar economic power. The social housing condominium is a transposition of the middle-and upper-class condominiums. Therefore, to explain the social housing condominiums, it is important to first address the middle-and upper-class model. In Latin America, the condominium model refers to a gated community complex [63]. In the Americas, gated communities have a long history, sometimes designed as walled or non-walled areas, but always associated with indicators of segregation. Real estate development and land markets use the condominium model as a product for exclusionary and often all-inclusive developments, anchored in the precariousness of cities and integrating homogeneous categories of space users/residents. In cities with high levels of socio-spatial inequalities, the marketing of the condominium model coincides with levels of violence, and the population looks for gates, fences and other security measures to try to live a life away from reality. This urban model is not exclusive to the larger cities: as a real estate product, gated communities, condominiums and other walled market products are spreading to areas where there are no levels of violence to "justify" living inside fences. In Brazil, walled-off enclaves are associated with high levels of urban violence, but especially with the fear of their inhabitants [64]. This urban model is growing in many parts of the world facing inequalities, particularly in the Global South. In South Africa, for example, there is a growing number of gated communities, many of which are on an urban scale and combine the concept of 'live, work, play' [65]. This has been also a well-known model for Brazil, as exemplified by the Alphaville concept [66]. The Brazilian condominium or the Chilean co-property urban model can be explained as a combination of the private and collective ownership of spaces. It is a system in which individual homeowners share the ownership, management and use of common areas. A condominium association is often created to manage the common areas, where rules and regulations for the use of the spaces, as well as some aesthetic principles for the houses and gardens, are discussed among the residents. Whether the condominium is for high-, medium-or low-income individuals, the result is class segregation, with exclusionary mechanisms preventing other social groups from entering the gated complex. The exclusionary mechanisms are those created to make the social difference invisible to higher income groups. For example, in countries such as Chile, Brazil, Argentina and Peru, high-income housing real estate products have several strategies. Separate entrances to the gated complex, and even to the house and apartment, are common, to avoid encounters between the rich homeowners and low-income workers such as housekeepers and security guards. Separate lifts are also common. This condominium model can be vertically oriented as a building or horizontally configured as a gated community of houses. Although usually associated with higher income groups, the condominium as a gated community is also common in social housing projects. There is another complex situation related to the condominium model in Brazil: Not every condominium is a legal condominium, that means, approved by legislation. It is common to have regular urban settlements of residential zones that are later fenced in by the residents themselves. This is usually conducted with the approval of the local council. This means that gated streets appear in a regular neighborhood, creating barrios and residential enclaves [57]. Condominium life, regardless of the social group, tends to exclude what is outside the walls of everyday social practices. The condominium concentrates the coexistence in the intramural space, in a space conceived and lived as a false protected universe that shelters a fictitious freedom. Gated communities, especially high-income ones, are associated by the dominant media with an image of happiness, ironically in an illusion of urban reality. The artificialization of high-income gated communities, empty of urban content, is derived from planned and controlled forms of living in utopian cities, with regulations, protocols and the promise of recreating an idealized experience or way of life. This artificial urban reality, based on the prototype of a high-income condominium, is also a morphological model for social housing, stimulated by several reasons, including: the reduction of public costs by directing the creation of living spaces within the housing estate to the private sector; -the false belief of managers, financing banks and other technicians that this is the best morphological model for collective living; -the "modus operandi" of production, following a practice that has been established for years, of reproducing construction models, with low construction costs and minimal creative thinking. In the condominiums of social housing, the impersonal authority of drug trafficking or other practices of organized crime is often added to the control of the walls that guide actions and challenge the orders of the condominium, personifying an authority constituted by the imposition of fear that demands submission and deals with exceptions to the rules, both intramural and extramural urban, as will be seen in the case studies in Section 6. The fact is that social housing in the form of condominiums has become established as a housing policy, increasingly seeking, in walled enclosures and reduced living, to manage intractable socio-spatial differences and to mitigate the lack of urbanity of the places in which they are located. The condominium model in social housing is complex and requires a lot of social work for the families to adapt to the model of sharing spaces and common costs, as the case studies in Section 6 will show. This is even more critical in large-scale social housing condominiums, with several buildings in the same condominium area, but also in singlefamily housing units in the condominium model, which are stamped ad nauseam in areas of urban expansion for low-, middle-and high-income social groups. It is a mistake to impose urban models from the middle and upper classes on the lower classes, uncritically accepting the behavior of dominant classes as a successful manifestation of civilization and urbanity, without investing in the definition of spatial structures that value the urban experience of the "other", and without reproducing either models of privileged areas or of poor areas. Dunker [41,67] highlights that it is necessary to consider the city as a principle, where territories are not excessively defensive or individualized, with ownership relations divided by social class or income. The relationship with the other needs to be established: the recognition of differences allows what Dunker [67] calls "productive experiences of indetermination", in which the indeterminate, the unknown, leads to the possibility of overcoming established patterns. The undetermined is the subject that is not interpreted by its appearance, speech, body movements or any social group or class, eliminating the prejudice of the social experience. For the psychoanalyst, indeterminacy is one of the principles of the city. However, as a defense against the undetermined, in the name of the insecurity that the strangeness of the other causes, protected spaces are created, concentrating groups with similar interests, where the conflict with the undetermined can be managed. The psychoanalyst brings a set of malaises that characterize contemporary society and which are part of the psychopathies of urban life: insecurity, intolerance and isolation from others [41]. To the author, the condominium is created to prevent those feelings, as an association of contemporary malaises avoided under management. What defines the condominium is the administration of usage and actions in the space, following rules and principles that seek to avoid a complete and indeterminate social experience. Thus, the model can be for housing, business, commerce and even health, like hospitals. With determined actions and based on fears and rules, the condominium classifies and isolates social groups, excluding others. In condominium models, private open spaces are planned for common use by residents of the same condominium, where collective practices are restricted by walls. This occurs independently of the income of the housing condominium. Outside, there are no greater interactions between groups, and the relationships of fear of the other are reproduced. The un-practice represents the dialectic that such reflections have stimulated: on the one hand, we have the territory with its possibility of transforming itself through use, belonging and combating alienated daily life; on the other, we have the neighborhoods where social housing is concentrated, a difficulty in bringing people closer to public spaces and social practices. Thus, the un-practice refers to a limited practice. It is not that it does not exist, but it occurs incompletely, due to the vulnerability and subjectivity present in the fragile social context, and also due to the imposition of urban models, norms of conduct or control by leaders within the social group. Some values need to the considered for the production of urban spaces in the context of vulnerability, among them are the rescue of history and the singularity of Latin American social production; the interdisciplinary understanding of the urban issue; the inclusion of the "other" through participatory processes; and the resistance to an uncritical reproduction of paradigms and models. Little or no social participation in the design of public policies and in the definition of the needs of social groups; control by few community leaders; the imposition of urban models; urban insertion in contexts of social, economic and cultural vulnerability; a weak relation between the housing internal space and the public or collective spaces; and between other dilemmas, make social practices limited and incomplete, that is, un-practiced. The complexity of daily life in social housing with different types of suffering, such as isolation; peripheral inclusion; loneliness; concentrated power by groups and leaders; and the permanent feeling of strangeness, insecurity and violence, are related to the social housing massive model production. The growth of urban violence, hostility between groups and fear of using public spaces is not only result of the social inequality, but especially of its maintenance [41], which is a public responsibility topic. --- Empirical Analysis and Its Relation to the Concepts Although this paper does not aim to explore the case studies due to their complexity, the concepts here proposed can be better understood through some examples. As already presented in the discussion, in many countries, social housing policies are characterized by a way of producing housing on a large-scale and using the condominium model. This characteristic was a modern utopian solution to face the increasing housing deficit, but it represents the sheer ineffectiveness of imposing a design model for a social group. Morphologically and architecturally, the blocks in each country have similar characteristics, such as the size and shape of the building, the proportion and layout of the apartments and the common areas in the condominium model. Usually, the selected families are registered on social programs. Depending on some political and local peculiarities, the families receive housing according to the availability of new constructions individually or sometimes as a group. The location of the housing depends on several factors, sometimes related to government regulations and sometimes related to the availability of the real estate of companies. In both cases, the location of the product is related to the real estate and urban land market, the second case presenting more disadvantages for social housing due to the cost of the best located urban land. Two case studies are presented to illustrate some of the particularities: The Brazilian housing block "Parque Estela Residential Condominium" and its neighbor "Vila Pimentas Residential Condominium", in Guarulhos-SP [22]. Both were created with the "Minha Casa Minha Vida" program, but in different modalities, the first as "Entities" and the second as "Enterprises" . The "Entities" modality was formatted in a similar way to the "Enterprises" modality, with the difference being that non-profit organizations, duly qualified by the Ministry of Cities, could be in charge of supporting the social group in the housing process. The case studies reveal the limitation of social practice in the intramural everyday life of social housing complexes, structured by the morphology of the condominium buildings, which directs practice to areas within the company, reducing daily coexistence-and conflict-to the neighbors themselves. The un-practiced territory, whose social practices are not fully realized due to various limitations, is the result of the historical context of the production of urban space, with a direct relationship to social, cultural, economic and ideological issues that characterize a certain social order. Physical and subjective situations guide social practices, conscious or not, in the open space. The lack of use and the strangeness of spaces for collective living in social housing are aspects of the limitation of un-practice, where individual behavior prevails to the detriment of collective behavior, whose conflicting processes are marked in the territory and in society. "Parque Estela" was conceived together with the National Movement for the Fight for Housing , a very active movement in The case studies reveal the limitation of social practice in the intramural everyday life of social housing complexes, structured by the morphology of the condominium buildings, which directs practice to areas within the company, reducing daily coexistence-and conflict-to the neighbors themselves. The un-practiced territory, whose social practices are not fully realized due to various limitations, is the result of the historical context of the production of urban space, with a direct relationship to social, cultural, economic and ideological issues that characterize a certain social order. Physical and subjective situations guide social practices, conscious or not, in the open space. The lack of use and the strangeness of spaces for collective living in social housing are aspects of the limitation of un-practice, where individual behavior prevails to the detriment of collective behavior, whose conflicting processes are marked in the territory and in society. "Parque Estela" was conceived together with the National Movement for the Fight for Housing , a very active movement in the metropolitan region of São Paulo, and with the technical consulting NGO "Peabiru", which advised the social group from the bureaucratic aspect of the program entry to the definition of the architectural project. "Parque Estela" consists of six residential buildings within the same condominium, five of which have five floors and one has six floors, for a total of 218 apartments of 41.35 m 2 . The architectural project was developed by the Peabiru team without the participation of the social group, since it depends on the regulations of the housing program, which do not allow much flexibility in the definition of the architectural model. On the other hand, participation was possible in the definition of the open spaces of the condominium, characterized by the open-air parking area and other open spaces for community living: a barbecue area, benches and tables, a playground and a community center . for community living: a barbecue area, benches and tables, a playground and a community center . Most of the residents had never lived in a condominium before. A community leader spoke with the author about some of the conflicts that have arisen: disputes between neighbors, looting and resistance to established norms. There is also a dilemma in working with condominiums in social housing, which is the cost of maintenance. Gardens, for example, have a cost. There is an illusion that moving to an apartment is the solution to many anxieties, due to a lack of knowledge about the routine costs and the limitations of the condominium model. In general, families believe that by distributing all the costs among all the neighbors, it is possible to have spaces like those that are mediated for higherincome classes. However, the management of condominiums in social housing involves a complexity typical for the social group, since there are still significant differences in income within the families. On the one hand, in the design of collective spaces, there is the possibility of building social bonds, even if they are limited to the social group and an un-practiced territory. On the other hand, it is in collective spaces that the main problems of coexistence arise, the solution to which requires daily exercise in recognizing a space that belongs to everyone and that welcomes differences. On the other side of the street, there are the "Vila Pimentas Residential Condominiums", which are divided into two different condominiums that were both built with the "Enterprise" version of the housing program. The families that received housing in Vila Pimentas lived in different favelas of Guarulhos. For example, Vila Pimentas I, with 580 housing units, brought together residents from three different Most of the residents had never lived in a condominium before. A community leader spoke with the author about some of the conflicts that have arisen: disputes between neighbors, looting and resistance to established norms. There is also a dilemma in working with condominiums in social housing, which is the cost of maintenance. Gardens, for example, have a cost. There is an illusion that moving to an apartment is the solution to many anxieties, due to a lack of knowledge about the routine costs and the limitations of the condominium model. In general, families believe that by distributing all the costs among all the neighbors, it is possible to have spaces like those that are mediated for higher-income classes. However, the management of condominiums in social housing involves a complexity typical for the social group, since there are still significant differences in income within the families. On the one hand, in the design of collective spaces, there is the possibility of building social bonds, even if they are limited to the social group and an un-practiced territory. On the other hand, it is in collective spaces that the main problems of coexistence arise, the solution to which requires daily exercise in recognizing a space that belongs to everyone and that welcomes differences. On the other side of the street, there are the "Vila Pimentas Residential Condominiums", which are divided into two different condominiums that were both built with the "Enterprise" version of the housing program. The families that received housing in Vila Pimentas lived in different favelas of Guarulhos. For example, Vila Pimentas I, with 580 housing units, brought together residents from three different favelas, causing an immediate conflict created by the combination of social groups with different histories and characteristics. As example of the history of the families, there is the history of the formal population of the "Vila Flora favela", known as "Itapegica", a group of almost 500 people. They suffered from several problems, such as fires and contamination of the soil where the favela was located, and needed to be relocated. In an interview with the author, a community leader said that women were more involved in moving from the favela to the Vila Pimenta condominium because the community environment was very unhealthy, with pollution from a lack of basic sanitation, insect and rodent infestations, and floods and fires. The women no longer wanted this kind of environment for their children's education. The community leader said that the move to "Vila Pimentas" was initially positive, as it fulfilled an individual's dream of owning a home. However, after a short time, problems began to arise due to the mixing of different social groups and the social problems that already existed in the favela, which were exacerbated by the rules of the condominium model: loud music and "baile funk" behavior, drug trafficking, conflicts and fear among the residents. In the beginning of the establishment of the condominium, which included the distribution of costs, there were already many conflicts between the members of the community, with situations of domestic violence and family disputes in the open space areas. Despite the difficulties in the favela, the community leader notes that there are still many residents who would have preferred to stay there rather than move to the condominium. This preference of some members of the social group occurs because in the favela, there were no extra bills to pay and, above all, no rules. As a result, many residents have not adapted to life in the condominium and are nostalgic for life in the favela. "Vila Pimentas I" has 29 housing blocks, each with a community manager, in addition to the building manager and the condominium sub-manager. In the common areas of the condominium, in addition to the areas reserved for parking, there are several remaining and unqualified open spaces . A wooden swing and a sports field are the only social elements built in the open spaces, but some appropriations can be seen, such as small gardens made of painted tires and plant species planted by the residents themselves, close to their blocks. Conflicts are aggravated by the presence of drug trafficking within the condominium. One of the most remote blocks, in a privileged position to control the entire open space of the condominium, is under the control of drug traffickers, which unfortunately limited the field research. As shown in the example, the imposition of the condominium model does not bring good results for social practice, which is aggravated by moving to a place with unknown neighbors, unplanned monthly expenses, and collective spaces that do not represent the needs of the residents. As for the common areas in condominiums, there are few ways to adapt them to the daily lives of families. Exercise equipment, barbecues, hammocks and kiosks, inspired by landscaping of higher-income condominiums, are a misguided transposition of the middle-and upper-class housing model to social housing. Initially, these areas are viewed positively by families because of the desire for spaces seen in the promotion of higher-class developments. Later, however, the cost and difficulty of maintenance, as well as the lack of identification with the spaces, cause them to deteriorate, leaving only empty spaces. In general, there is a fear of using the space outside the walls, a situation felt by the researcher herself, who was always invited by residents to park her private vehicle inside the condominium for security reasons. The researcher was also always accompanied by residents during field visits, even if it was only to cross the street to get to the other condominium. Residents fear some clashes with drug leaders who are positioned in strategic locations both between the condominium walls and within the condominium areas . the same condominium. This also brings together different leaderships of social groups, and the structure of relationships can be oriented towards mechanisms of domination that structure the habitus [42]. The condominium is a kind of an autonomous urban unit, which replaces the lack of urbanity in social housing surroundings. However, the social housing condominium is governed by rules and exceptions to them, which lead to losses of a complete social experience due to the isolation of individuals and the un-practice. In condominiums, differences are resolved through a subtle code of coexistence, in an invention of a common life without a real community, that is, an un-practiced, invented, controlled and idealized everyday life limited to the same social group. The condominium represents a new policy for the management of differences, conflicts and social antagonisms, which requires a leader figure who proposes the ideal of coexistence in order to manage conflicts and make everyday life possible. The leader is sometimes a community leader, sometimes the organized crime leaders, who perform control and have a power status. The social housing condominium represents an "included" poverty, that reproduces and maintains itself in the same place, but in a controlled space. Concentrating families with the same economic profile also brings together social issues. Neighborhoods where social housing is concentrated have accentuated social problems and fear in the use of open spaces, in addition to encouraging the persistence of peripheral inclusion. --- Conclusions: The Importance of Considering Open Spaces in Social Housing Policies and Overcoming Peripheral Inclusion and Un-Practice As presented in this paper, the peripheral inclusion and un-practice concepts are both interconnected and related to the inequality and vulnerability in cities. The peripheral inclusion of the other in social practice causes the un-practice. The concept can be extended to different situations when the fear, exclusivity and invisibility of social groups are presented. In the case of Latin American social housing, this limitation is related to, but not limited to, the use of the condominium model. In some countries, it is possible that the condominium model will be adapted to social housing and there is no need to change this reality. However, in Brazil and Chile, as in some other Latin American countries, such as Mexico and Peru, the condominium as an urban solution is a model to be discontinued, especially for social housing. With regard to the condominium model or other urban solutions that are transferred from high-income to social-income groups, it is important to emphasize that the imposition of urban models for social housing is a mistake, aggravated by the urban insertion in contexts of social and economic vulnerability and also by management without the participation of the population in the defense of their interests. This relationship of fear and control is more complex in social housing condominiums than in others with different social classes. In social housing, it is common for groups from different cultural backgrounds and origins to move together to the same condominium. This also brings together different leaderships of social groups, and the structure of relationships can be oriented towards mechanisms of domination that structure the habitus [42]. The condominium is a kind of an autonomous urban unit, which replaces the lack of urbanity in social housing surroundings. However, the social housing condominium is governed by rules and exceptions to them, which lead to losses of a complete social experience due to the isolation of individuals and the un-practice. In condominiums, differences are resolved through a subtle code of coexistence, in an invention of a common life without a real community, that is, an un-practiced, invented, controlled and idealized everyday life limited to the same social group. The condominium represents a new policy for the management of differences, conflicts and social antagonisms, which requires a leader figure who proposes the ideal of coexistence in order to manage conflicts and make everyday life possible. The leader is sometimes a community leader, sometimes the organized crime leaders, who perform control and have a power status. The social housing condominium represents an "included" poverty, that reproduces and maintains itself in the same place, but in a controlled space. Concentrating families with the same economic profile also brings together social issues. Neighborhoods where social housing is concentrated have accentuated social problems and fear in the use of open spaces, in addition to encouraging the persistence of peripheral inclusion. --- Conclusions: The Importance of Considering Open Spaces in Social Housing Policies and Overcoming Peripheral Inclusion and Un-Practice As presented in this paper, the peripheral inclusion and un-practice concepts are both interconnected and related to the inequality and vulnerability in cities. The peripheral inclusion of the other in social practice causes the un-practice. The concept can be extended to different situations when the fear, exclusivity and invisibility of social groups are presented. In the case of Latin American social housing, this limitation is related to, but not limited to, the use of the condominium model. In some countries, it is possible that the condominium model will be adapted to social housing and there is no need to change this reality. However, in Brazil and Chile, as in some other Latin American countries, such as Mexico and Peru, the condominium as an urban solution is a model to be discontinued, especially for social housing. With regard to the condominium model or other urban solutions that are transferred from high-income to social-income groups, it is important to emphasize that the imposi-tion of urban models for social housing is a mistake, aggravated by the urban insertion in contexts of social and economic vulnerability and also by management without the participation of the population in the defense of their interests. Although appropriation is not always related to the quality of spaces, there is a need to establish qualitative criteria for their analysis. However, it is complex to define them without falling into the pitfall of imposing an external solution, which can be developed in an imposing way as a mechanism of social control. However, the new housing areas that remain marginalized will be doomed to failure, not only because of their location, but also because they are on the margins of the elaboration and construction process. Thinking and producing social housing from an external perspective, without understanding the specifics needs of families, attacks the freedom and individuality of the social group. Current social practices in social housing are highly influenced by subjectivity and individualism, since the stimulus caused by the individual struggle for access to housing has particularized the celebration of collective achievement. The achievement of each family is celebrated individually, and not the conquest of the social group [32], except for the housing produced by organized families. Accordingly, the ways to overcome peripheral inclusion and un-practice are not unique and depend on different situations. Here are four guidelines to help overcome them: a fair city, neighborhood creation, rights to city and landscape, and political consciousness. The first guideline is to create a fair city, that is, a city in which identity and dignity are respected; equal opportunities are guaranteed; popular participation in the creation of social norms and urban policies is assured; the use of public spaces for democratic practices with free expression is recognized; differences coexist without discrimination, marginalization and stigmatization; the social economy is promoted with public resources and the equitable distribution of wealth; the use value of urban space is recognized above its market value; and the spontaneous and free expression of people is allowed in their urban experience [22,46]. The second guideline is to create neighborhoods with a mix of functions, construction typologies, as well as variations of open spaces, public infrastructure and the necessary facilities for social group activities. The focus on the neighborhood will allow the passage from "habitat" to a "lived space". This may sound very basic for countries in the Global North, but for the Global South, it is still on the to-do list. A culture of taking care of common areas also needs to be implemented. Considering the creation of a variation of open spaces, this is an urban design solution and strategy to meet both social and environmental needs. Open spaces should be planned as a system, where spaces relate to each other to provide opportunities for human activity and movement. Public squares, sidewalks and other public open spaces should be provided in addition to the private open spaces of courtyards, with a variety and combination of open spaces to encourage social encounters and street life. On the other hand, the practical success of the spatial design depends on many variations, and the cultural habits of the inhabitants should be taken into account, as well as the bioclimatic characteristics. Often, the continuity production of housing neighborhoods without articulated open spaces does not allow a scenario that stimulates an effective relationship with the place. The importance of open spaces in urban design is precisely the possibility of articulating constructed elements, which include housing units, building condominiums, commercial or mixed-use areas and urban equipment, among others, through the creation of squares, accesses, sidewalks and vegetation. These elements can establish a visual unit for the space users, which facilitates identification with the surroundings and encourages their use and appropriation. In general, what is observed is that open spaces are treated as remnants in areas with social housing, which are not relevant to generating a positive spatial identity. The scale relationship of the blocks is also essential. It is possible to design a housing neighborhood that allows spatial identity for the users. However, in order to do this, a social function of conviviality, circulation and appropriation of open spaces must be considered, and demands must be made for them to be designed and built. Open spaces are directly associated with the territorial and spatial context, which affects the daily lives of users. Therefore, they should be parameterized following requirements that qualify urban design, focusing on their social function, to achieve the creation of a habitat. This is also related to the third guideline: rights. The right to the city [68] is also the right to the landscape [69]. Public spaces have the ability to strengthen the public sphere. Because of this importance, they must be taken into account at many political levels. The relevance and appreciation of the public dimension of space includes the search and legal action for rights beyond the right to the city, including the right to landscape, places, environment and territory [69]. The fourth and final guideline is the need for political awareness to implement socioeconomic changes. This includes dedicating effort and investment to the design and maintenance of public open spaces. This should be considered from the perspective of what is best for the social group and for the future of mankind. Many categories should be taken into account: citizen participation and social networks, the management of spaces, urban insertion, microclimate adaptation, morphological diversity and functional flexibility, visibility and dimension [22]. The four guidelines are connected. Addressing them could have a positive impact on the quality of life and the reduction of urban problems caused by inequality in cities. --- Data Availability Statement: Data supporting reported results can be found at https://teses.usp.br/ teses/disponiveis/16/16135/tde-09062017-110211/pt-br.php . --- Author Contributions: Conceptualization, V.G.D.; analysis, V.G.D.; writing-original draft preparation, V.G.D.; writing-review and editing, V.G.D.; supervision, E.F.Q.; funding acquisition, V.G.D. All authors have read and agreed to the published version of the manuscript. ---
This article presents new concepts for discussing urban social space, named "social landscape", "peripheral inclusion" and "un-practice". These concepts are based on the analysis of social practices in vulnerable neighborhoods with a high number of social housing blocks in South America. The aim of the article is to show that the complexity of social practices in vulnerable urban areas is not only the result of the urban environment, which combines social inequality, marginalization and insecurity, but also and above all of the management and maintenance of this inequality. The research method combines bibliographical research with the method of non-participant systematic observation, the latter analyzing everyday life in social housing areas of São Paulo-SP (Brazil) and Santiago (Chile). The discussion and results will lead the reader to understand not only the concepts, but also the idea that open spaces have an important role in social practices, especially public spaces. It seeks to demonstrate the importance of linking public spaces and housing in public policies for the creation of social housing, as opposed to housing policies that focus on the production of architecture disconnected from the urban and social reality.
difficulty because they are unencumbered by caregiving responsibilities and can devote themselves to their job . Despite advances for gender equity in academia, the ideal worker norm prevails. Moreover, it is clear that this norm "fits" gender expectations better for men than women . According to Heilman's lack of fit framework , as well as Eagly and Karau's role incongruity theory, women are subject to evaluation in the workplace that is predicated on the stereotypes that assume they "fit" traditional male workplace demands less well than men do. Women enter graduate degrees in roughly equal proportions as men, yet women are not proportionately represented on the faculty tenure-track, though numbers are more even during the pretenure stage . Specifically, although less than one-third of full professors are women, one-half of assistant professors are Nearly fifty years ago, Hochschild argued in "Inside the Clockwork of Male Careers" that it would be extremely difficult, if not impossible, for women to achieve tenure because women's childbearing years coincide with pretenure years . In the intervening time, numerous scholars have similarly critiqued the tenure track system because it is predicated on the "ideal male worker." This ideal worker can obtain tenure with little Sex Roles 87: [498][499][500][501][502][503][504][505][506][507][508][509][510][511][512][513][514] women . Thus, while men benefit from their perceived genderbased "fit" with roles conventionally held by men, women incur costs because of their lack of fit, and these costs accumulate over the course of a career, so that more men, and fewer women, advance. In the present study, we examined one of the biggest challenges women faculty can encounter on the tenure track: caregiving for children. Caring for children is an ongoing task that can be unpredictable in terms of what responsibilities need to be met. School snow days, appointments, and illnesses can impact parents' professional lives while at work or on the weekends. In addition to unexpected interruptions, there are daily caregiving responsibilities, like meal preparation, monitoring homework, organizing appointments, and transportation to different activities. Despite societal changes regarding men's involvement in childrearing, women remain the primary caregivers in society . That is, women provide the majority of caregiving for both labor that is visible, such as cooking or laundry as well as labor that is less visible, such as planning for future actions and providing reminders . In addition, unlike men who are working parents, women operate under pressure from ambient stereotypes that paint a picture of motherhood and career success as incompatible . This strain that faculty who are parents, especially women, endure raises the questions: How do the day-to-day demands of caregiving affect faculty members' professional lives? Does sharing childcare responsibilities with a partner buffer the adverse effects on one's professional life? Previous research has consistently documented gender differences among parents on explicit tenure-related criteria, such as publishing and obtaining grant funding . However, less is known about how caregiving responsibilities affect other aspects of faculty members' professional lives. For instance, caregiving responsibilities can lead to interruptions at work, professional travel needing to be curtailed, or turning down a certain professional opportunity. Thus, in the present study, we sought to understand how professional life interruptions due to caregiving were associated with faculty members' intention to leave and career satisfaction. We were able to compare how this competing family demand might impede women's career development, while in fact not impeding men's, as a result of the relative fit with the career demands and differential gender role expectations. Given that shared parenting responsibilities with a partner is integral to work-life balance and well-being for women , we also examined how this source of support may mitigate the effects of caregiving on faculty members', particularly women's, careers pre-and post-tenure. In this paper, we focused on professional and parenting dynamics among cis-gender women and men in ostensibly heterosexual partnerships . As such, we draw on theory and research centered on gendered norms and expectations, primarily in the U.S. For ease of readability, we will refer to "professional life interruptions due to child caregiving responsibilities" as "professional life interruptions." --- Gendered Expectations for Raising a Family While Working Decades of research on working parents has concluded that starting a family while working toward and maintaining a successful career can be uniquely challenging for women . Research on academic parents has also found that women's careers are often negatively affected after parenthood, while men's are relatively unaffected-a phenomenon known as the "maternal wall" . Women's careers compared to men's are often hindered due to parenthood because women experience unique gendered expectations. That is, women are socialized to adopt an ideal of motherhood that includes primary caregiving responsibilities, whereas men's parenting ideals are less demanding . At the same time, women are affected by stereotypes that paint a conflicting picture of motherhood and career success . According to Eagly and Karau's role incongruity model of prejudice, hostile prejudices are activated when a member of a social group enacts a stereotype-incongruent social role. Rooted in a gender role expectation framework, the role incongruity model of prejudice posits that women are stereotyped as and expected to engage in nurturing roles while men are associated with agentic roles . Given these gender-based expectations, women who engage in roles associated with men, such as a professional career or "breadwinning," are met with stigma. For example, women endure social and economic repercussions when they engage in stereotypically male behavior . Of course the converse is also true; both role incongruity theory and Heilman and Caleo's lack of fit model assume that because expectations about how gender norms fit or do not fit with the demands of career advancement differentially affect men and women, 1 3 men's advancement will not be affected by professional career interruptions, while women's will be. In the context of caregiving, motherhood evokes traditional feminine stereotypes and emphasizes the notion that women should be nurturing, warm, and other-oriented . In contrast, careers in academia, especially those in the sciences and leadership positions, are associated with stereotypic masculinity and perceived as inconsistent with traditional feminine characteristics . Arguably, the dual roles of professional and mother elicit conflicting expectations. On one hand, succeeding in a professional capacity entails agency and competitiveness; on the other hand, motherhood entails nurturance and warmth . Moreover, these conflicting expections can negatively affect women's job performance. For instance, when women are asked to think about either a parent or career domain, they exhibit a pattern of switching activation which, in turn, negatively affects their processing speed and work engagement . This understanding suggests that the incongruity or lack of fit between women's gendered expectations of career success and motherhood has clear psychological and work-specific consequences. Given this seeming incongruity of roles, it is not surprising that people view working mothers as less competent at and committed to their careers than working fathers as well as working women without children . As such, women in professional positions who become mothers report that they experience a lack of support for family issues from their colleagues and supervisors, ostensibly both parents and non-parents . Colleagues who hold negative views about mothers in the workplace may be less likely to help advance women faculty members' careers, such as offering opportunities. In this study, some of the professional life interferences that we examined were related to how parents may perceive a lack of support from their colleagues or poor treatment . --- Faculty Members' Work Context Much attention has been paid to understanding the extent to which there are gender differences among parents on explicit tenure-related criteria, such as publishing and obtaining grant funding. Indeed, among parents, women tend to publish less often and obtain fewer grants than men . Less is known, however, about how caregiving responsibilities affect other aspects of professional life, such as having professional travel curtailed, work disruptions, or opportunities not offered. For instance, one study of 127 faculty members found that 78% of faculty members did not submit a conference abstract and 50% turned down a talk due to childcare issues . Conference travel is important, especially during the pre-tenure years, as these professional meetings can serve as a way to network, receive peer feedback, and build a scholarly reptuation . With respect to work disruptions due to caregiving, it may seem like an academic career is compatible with parenthood. Faculty members may have flexibility with their course schedules or can engage in writing outside the typical weekday work window. However, the core tasks of faculty members' jobs involve scholarly activity and teaching, and these are tasks that require blocks of uninterrupted time to complete. In fact, one of the top cited barriers to productivity mentioned by faculty is lack of time to dedicate to writing and conducting research . Unlike other tasks or occupations , productive scholarly activity relies on blocking off dedicated time, which is consistent with the ability of faculty members to achieve flow, or a state of total involvement in an activity that consumes one's full attention . The mental energy needed to synthesize information, conduct complex analyses, or generate new knowledge can be challenging to complete when work interruptions occur, or unexpected time away is needed due to caregiving responsibilities. Given the demands of achieving tenure, work-life balance may be particularly challenging for pre-tenure faculty members. Pre-tenure faculty members work more hours per week than their tenured peers . Moreover, women who have children soon after they receive their doctorate are less likely to achieve tenure than men who have children during the same period . In a national study of academic physicians, mothers spent 8.5 more hours per week on domestic activities than fathers . Thus, in addition to working many hours to advance one's career during the pre-tenure years, becoming a parent during this time appears to adversely affect women's position in academia. Tenure track positions are also unique because these jobs have steadily declined in the U.S. . Thus, there are a limited number of positions, which creates additional pressure for faculty members' to be highly productive. Moreover, it is rare for academic institutions to offer reduced workload arrangements for tenure track the proportion of time spent on a given task) are linked with job outcomes and does not examine how parents may share parenting responsibilities . In the case of academia, little is known about how faculty members who are parents navigate caregiving and how different aspects of caregiving may affect their careers. In this study, we expand this research by specifically examining the ways in which faculty members perceive that caregiving responsibilities affect their professional life while taking into account the extent to which they share caregiving responsibilities with a partner. That is, we examined situations unique to an academic career to better understand how caregiving responsibilities-and sharing these responsibilities-may affect career outcomes among pre-and post-tenure faculty members. --- Study Aims and Hypotheses We examined the relationship between professional life interferences due to caregiving and career outcomes among pre-and post-tenure faculty members, paying special attention to the role of gender and partner support for caregiving. We focused on intention to stay in one's current position, because this affective response is a robust predictor of quitting or staying at one's job . Moreover, we focused on career satisfaction because it is a well-established predictor of productivity, retention, and well-being . Both intention to stay and career satisfaction are essential in nearly all turnover models and frameworks . Drawing on both the lack of fit and the role incongruity model of prejudice frameworks, we anticipated that more professional life interferences would negatively affect pretenure women's desire to stay in their position and career satisfaction, compared with men at the same career stage, and both women and men tenured faculty members. That is, we hypothesized a three-way interaction among the number of professional life interference due to children, gender, and tenure status for both job outcomes. We did not expect that gender would moderate this relationship for tenured faculty. Instead, we expected a main effect among post-tenure faculty men and women, such that job outcomes would be affected by the extent to which they experienced professional life interferences. Given that women, including those in academia, experience the brunt of childcare responsibilities , we expected that early career women would feel the tension between managing a successful career and raising a family to a greater extent than pre-tenure men and faculty members who have obtained tenure. faculty, such as part-time positions or the ability to take substantial time off . As such, tenure track positions are highly competitive and the lack of options for a work schedule that allows for uninterrupted periods of time while caregiving for a new child, can further hinder academic parents', especially women's, advancement on the tenure track. Taken together, faculty members' work contexts entail unique tasks, including stretches of uninterrupted time and professional travel to advance one's career. Working toward advancing one's career, however, can be negatively impacted by a range of caregiving responsibilities. While research has focused on gender differences in publishing and obtaining grant funding, it is unclear how professional life interferences due to caregiving affect faculty members' career outcomes. This study seeks to further expand this area of inquiry to better understand how caregiving responsibilities affect pre-and post-tenure faculty members' intention to stay and career satisfaction. --- Child Caregiving and Partner Support How parents work with each other to care for children is a key to relationship quality and personal well-being . In most families, women engage in a disproportionate share of parenting, even if they are employed full-time . This is also the case among dual-career faculty couples . The caregiving responsibilities that women are disproportionately responsible for involve visible actions as well as invisible labor . Feeling disproportionately responsible for household and child caregiving responsibilities is linked with strains on women's personal well-being and lower satisfaction with their partners . When responsibilities are shared, or at least perceived to be shared, work-life balance and other psychological benefits are better achieved by parents, especially women . In addition to personal and relationship benefits, sharing child caregiving responsibilities can also positively affect parents' careers. For instance, research has consistently documented that experiencing a high degree of work-family conflict is linked with low job satisfaction and organizational commitment as well as high job turnover . Most of this research focused on how responsibilities at home . The final sample consisted of 753 faculty members who were parents with a partner and completed measures central to this study's research questions. Of the 753 parents, 171 were untenured and 582 were tenured; 505 respondents were men and 248 were women. Looking within tenure status, among pre-tenure faculty 74 identified as women and 97 identified as men. Among tenured faculty, 176 identified as women and 409 identified as men. In terms of race/ethnicity, the majority of the sample identified as White/European American; 79 identified as Asian/Asian American/Pacific Islander; 33 identified as Latina/o; 22 identified as Black/ African American; 6 identified as multi-racial/ethnic; 4 identified as Native American/American Indian. The remaining participants did not indicate their race/ethnicity. The majority of faculty members were currently in a relationship. At 80% power , our sample size enabled us to examine effects with seven predictors as small as f 2 = 0.02 and larger . --- Measures Tenure track faculty members responded to questions related to their experiences at their institution and provided personal and professional background information . Next, tenure track faculty members reported on their career satisfaction, intention to leave their current position, and whether different aspects of their professional life have been affected by having children. Faculty also responded to several questions related to workplace climate, mentoring, resources, and service, which are factors of faculty life that are beyond the scope this paper , Moors and colleagues , and Settles and colleagues for related research). For the full survey, see: https:// advance.umich.edu/research. --- Professional Life Interferences due to Caregiving To assess the number of professional life interferences due to caregiving responsibilities, faculty were instructed to indicate whether having children had negatively affected seven aspects of their professional life in the past five years. These professional life interferences included: "professional travel As discussed earlier, childcare demands are greater with younger children and this developmental time period often coincides with the work-demand-intensive pre-tenure years . We further examined whether shared parenting responsibilities served as a buffer to the demands of caregiving and career outcomes among pre-tenure faculty. In line with previous work , we predicted that sharing childcare responsibilities with one's partner would mitigate the hypothesized negative effect of caregiving on career satisfaction and desire to stay for pre-tenure women. Although we expected partner support for caregiving responsibilities would be beneficial for all academic parents to help manage the ways in which caregiving affects one's professional life, we expected this support to be particularly beneficial to pre-tenure women. Since the tenure review process is based on demonstrating high levels of competence and productivity in the early years of one's academic career, the lack of fit and role incongruity issues are maximized in this period . In particular, women are socially prescribed and assume greater responsibility for caregiving , thus making the pre-tenure years especially difficult for women to navigate their career and caregiving responsibilities. --- Method --- Participants and Procedure Tenure-track faculty participants were part of a broader internal university-wide climate assessment survey initiative at a large Midwest Research I university in the United States, which was approved by the authors' Institutional Review Board. Approximately 30,000 undergraduate and 17,000 graduate students attend the university with approximately 5,000 faculty members . The tenure requirements for this institution include a robust publication and grant funding portfolio as well as excellence in teaching. A total of 1,373 tenure track faculty members participated in the study with average response rate of 47%. In a study of 490 organization survey studies, Baruch & Holtom found that the average response rate was 35.7%; thus, this study's response rate is on par with the average response rate for organizational research. Our goal was to examine the relationship between caregiving responsibilities and job outcomes; thus, 185 faculty members who reported that they were not parents were excluded from this study. Of the 1,188 faculty members who reported that they had at least one child, 159 faculty --- Intention to Leave We used one item to assess faculty members' intention to leave their current position : "How often do you think about leaving [institution name]?" Participants rated the extent to which they thought about leaving using a 5-point Likert scale from 1 to 5 . --- Shared Parenting Responsibilities One item assessed the shared level of parenting responsibilities : "How would you describe, in general, the distribution of parenting responsibilities between you and your spouse/partner?" Participants rated on a scale from 1 to 5 . The midpoint of the scale reflected that the parenting responsibilities were shared equally. We recoded this item to reflect shared parenting responsibilities and primarily woman's responsibility . Specifically, women who indicated a 1 or a 2 on the scale and men who indicated a 4 or a 5 were coded as 0 to reflect that the primary caregiving responsibilities were presumably the woman's . The decision to dichotomize the item into two groups was made because only 4% of the sample indicated that men were primarily responsible for caregiving. Specifically, four pre-tenure men indicated that they were primarily responsible for caregiving, and three pre-tenure women indicated that their partners were primarily responsible. Given the small sample size of men who were primarily responsible for childcare, these participants were excluded from analyses that included partner support due to inadequate statistical power. While dichtomization of continuous variables can yield misleading results , this decision, in some circumstances, can be justified, as in this study . --- Demographic Variables Participants self-reported their tenure status at time of survey assessment and their gender . Missing responses for gender were replaced with available human resources data from the institution sampled in this study. curtailed," "inability to work evenings and weekends," "disruptions of work during the day," "unexpected time away from work," "opportunities not offered," and "opportunities not taken." An additional "other" option with an open-ended option was provided. These professional life interferences are consistent with qualitative research that highlights unique stressors that women faculty experience while caregiving . Faculty members indicated whether each aspect of their professional life had been affected via a checkbox response option . Similar to research that assesses stressful life events , we created a composite measure by taking the sum of all seven items for each participant, values ranging from 0 to 7 . --- Career Satisfaction To capture the different aspects of satisfaction with one's academic career , we used twelve items from the University of Michigan Faculty Work-Life Study α = 0.86; Center for the Study of Higher and Postsecondary Education & Center for the Education of Women, 1999; also see DeCastro et al., and Settles et al., for further scale validation. Participants were asked: "How satisfied are you with the following dimensions of your professional development in your primary department/unit?" and to select the response option that best expresses their level of satisfaction for each dimension. The twelve items were: "opportunity to collaborate with other faculty;" "amount of social interaction with members of my department/unit;" "level of funding for my research or creative efforts;" "current salary in comparison to the salaries of my [institution] colleagues;" "ability to attract students to work with me;" "sense of being valued as a teacher by my students;" "sense of being valued as a mentor or advisor by my students;" "sense of being valued for my teaching by members of my department/unit;" "sense of being valued for my research, scholarship, or creativity by members of my department/unit;" "level of intellectual stimulation in my day-to-day contacts with faculty colleagues;" "sense of contributing to theoretical developments in my discipline;" and "balance between professional and personal life." Additionally, faculty members were asked to rate their overall satisfaction with their current position on a 5-point Likert scale that ranged from 1 to 5 . Items were averaged, with higher values indicating greater career satisfaction. post-tenure men reported 2.62 ; see Table 1 and also Table 2 for means organized by tenure status. With respect to tenure status, 30% of women were untenured compared to 19% of men = 10.40, p < .001). --- Effects of Caregiving on Career Satisfaction and Intention to Leave To test our hypotheses, we performed two hierarchical multiple regression analyses with intention to leave and career satisfaction serving as the dependent variables. The number of professional life interferences, gender, and tenure status were entered in the first step; all possible two-way interactions were entered in the second step; and the gender x tenure status x aspects of professional life affected by children three-way interaction was entered in the third step; see Table 3 , 1936). Specifically, we used the Johson-Neyman technique because it avoids the need to arbitrarily define "low," "moderate," or "high" levels of professional life interferences to probe the significant interaction term. --- Results --- Preliminary Analyses Tables 1 and2 summarize the descriptive statistics and bivariate correlations among demographic variables, professional life interferences, and career-related measures. In terms of the number of professional life interferences experienced by faculty members within the past five years, on average, pre-tenure women reported 3.85, pre-tenure men reported 3.08, post-tenure women reported 3.32, and 1 3 professional life interferences on intention to leave current position among pre-tenure faculty members. Among pre-tenure faculty, women expressed greater intention to leave their job when they experienced more professional life interferences, b = 0.23, p = .006, while among pre-tenure faculty, men's intention to leave was not related to the number of professional life intereferences they experienced, b = 0.003, p = .96. According to the region of significance test , the relationship between gender and intention to leave was significant for pre-tenure women who experienced 2.62 instances of professional life interruptions . Among pre-tenure faculty, 79% of women experienced 2.62 or more professional life interuptions compared to 68% of men. Among post-tenure faculty, both women and men expressed greater intention to leave when they experienced Instead, this technique probes a significant interaction by locating the point on a continuous variable where a relationship becomes significant across the values of the moderator variables. In other words, this technique allows us to determine the exact number of professional life interferences in which career outcomes are negatively impacted for pre-tenure women . Additional hierarchical multiple regression analyses limited to pre-tenure faculty were conducted to examine whether sharing childcare responsibilities with their partner buffered the effects of professional life interferences on pre-tenure women's career outcomes. As shown in the final models reported in Table 3, our hypothesized three-way interaction among professional life interferences, gender, and tenure status was significant for both job outcomes. As illustrated in Fig. 1, gender moderated experienced 0.82 professional life interferences . Among pre-tenure faculty, 100% of women experienced one or more aspects of their professional life affected by children. Among post-tenure faculty, both women and men had lower career satisfaction when they experienced more aspects of their professional life affected by child caregiving . --- Exploratory Analyses: Types of Caregiving Responsibilities and Tenure Rank To further examine these patterns, we conducted two additional exploratory analyses. First, we examined whether one or more specific type of professional life interference was driving the gender a greater number of professional life interferences . On average, post-tenure women and men reported 3.32 and 2.61 professional life interferences and had average scores of 3.06 and 2.75 for intention to leave, respectively; see Table 1. As shown in Fig. 2, further supporting our hypothesis, gender moderated the effects of professional life interferences on career satisfaction among pre-tenure faculty members. Among pre-tenure faculty, women had lower career satisfaction when they experienced a greater number of professional life interferences, b = -0.17, p = .001, while men's career satisfaction at this stage was not affected by professional life interferences, b = -0.03, p = .46. According to the region of significance test , pre-tenure women were significantly less satisfied with their career than pre-tenure men when they men were equally likely to indicate that they shared caregiving responsibility with a partner and that women were primarily responsible for caregiving, χ 2 = 1.81, p = .12. As described earlier, these comparisons focused on sharing caregiving with a partner and women as the primary caregiver because very few faculty members indicated that men had the primarly responsibility for caregiving. Moreover, compared to pre-tenure men, pre-tenure women reported more professional life interferences, regardless of whether they reported that they were primarily responsible for caregiving or shared responsibilities with a partner , F = 15.74, p < .01. To test our hypothesis that shared caregiving responsibilities would buffer the adverse effects of professional life interferences on pre-tenure women's career outcomes, we conducted two regression analyses with intention to leave and career satisfaction serving as the dependent variables. The number of professional life interferences, gender, and tenure status were entered in the first step; all possible two-way interactions were entered in the second step; and the gender x tenure status x aspects of professional life affected by children three-way interaction was entered in the third step; see Table 4 for final model. Inconsistent with our hypotheses, for both career satisfaction and intention to leave, there were no significant moderating effects of shared parenting responsibilities with professional life interferences among pre-tenure faculty; see Table 4. Specifically, neither regression analysis yielded a significant gender x professional life interference x shared parenting responsibilities interaction, β = -0.20, p = .56 and β = 0.19, p = .57 . In other words, inconsistent with our predictions, whether pre-tenure women shared responsibilities with their partner or were primarily responsible for these responsibilities did not influence the number of professional life interferences they experienced and, in turn, did not influence their intention to stay or career satisfaction. --- Exploratory Analyses: Partner Employement Status and Sharing Caregiving Responsibilities To better understand a potential reason as to why we did not find support for this buffering hypothesis, we explored the role of employment status of faculty members' partners. Perhaps, there were differences in the employment status of people's partners that could explain the extent to which people shared caregiving responsibilities with their partner. Given the sample size of pre-tenure faculty parents was relatively small , there was limited statistical power for additional analyses . We found that men's partners were more likely than difference in career outcomes among pre-tenure faculty. Specifically, we conducted a series of regression analyses with each of the six professional life interferences individually entered into the model . None of the three-way interaction terms predicting intention to leave and career satisfaction were significant, β range = 0.06-0.13, p values = 0.18-0.71. These results suggest that a specific type of professional life interference is not driving the results. Instead, the accumulation of professional life interferences is negatively associated with pre-tenure women's intention to stay and career satisfaction . To better understand the results among post-tenure faculty, we examined whether women and men who were associate and full rank professors were differentially affected by professional life interferences. We conducted two additional regression analyses with gender, rank, and professional life interferences predicting intention to leave and career satisfaction. We found that the interaction between gender, rank , and professional life interferences was not significant for intention to leave, but was significant for career satisfaction, β = 0.19, p = .10 and β = 0.59, p = .002. Specifically, among associate rank faculty, women's career satisfaction was not related to the number of professional life interferences they experienced, b = 0.05, p = .26. That is, the simple slope for women was non-significant and, of note, their career satisfaction was moderately low . Among associate rank faculty, men had lower career satisfaction when they experienced a greater number of professional life interferences, b = -0.14, p = .007. Among full professors , more professional life interferences were linked with lower career satisfaction, b = -0.09, p = .004 and b = -0.05, p = .011. In general, the same pattern of results was found as the main analyses , with the exception that career satisfaction for women who are at the associate professor rank does not appear to be hindered by accumulating professional life interferences . --- Pre-tenure Faculty: Partner Support for Caregiving Responsibilities Of the 158 pre-tenure parents included in these analyses, 51% indicated that they shared parenting responsibilities equally with a partner and 49% indicated that these responsibilities were primarily handled by women. Women and early years of their career and childrearing . However, these challenges are exacerbated for women, because of the lack of fit and incongruity of gender norms and workplace expectations . Despite changes in social norms for parenting over time, women remain the primary caregivers . Thus, women in tenure track positions who are parents endure work-family strains that men likely do not. Previous research has consistently demonstrated that there is a gender difference among parents on explicit tenure-related criteria ; however, less is known about the varied ways in which caregiving responsibilities are associated with faculty members' work and, in turn, affect their career outcomes. In this study, we sought to remedy this gap in knowledge by examing how professional life interferences, such as having travel curtailed due to caregiving, were associated with faculty members' intention to stay and career satisfaction. We also examined the role of sharing caregiving responsibilities with a partner on faculty members' career outcomes. We predicted that pre-tenure women, compared to pre-tenure men as well as tenured faculty, would experience more professional life interferences, and this would be linked with negative career outcomes, such as low career satisfaction. Given that women are primarily responsible for caregiving resonsibilities , we expected that pre-tenure women would feel the tension between managing a successful career and raising a family to a greater extent than pre-tenure men and post-tenure faculty members of both genders. We also expected that sharing parenting responsibilities with a partner might ameliorate the demands of caregiving on pre-tenure women's professional life. Results showed that pre-and post-tenure faculty members' professional lives are affected by caregiving responsibilities in a variety of ways-from disruptions during the workday to opportunities not offered. As expected and in women's to be unemployed or hold part-time employment, χ 2 = 16.28, p < .001. Specifically, 30% of men's partners were unemployed compared with 9% of women's partners. In addition, 16% of men's partners held part-time positions compared with 9% of women's partners. Men with partners who were unemployed and employed part-time were more likely to indicate that their partner primarily handled caregiving than sharing caregiving equally, but this was not the case for women, χ 2 = 23.42, p < .001. Women pre-tenure faculty members with partners who were employed fulltime were equally likely to be primarily responsible for caregiving as they were to equally share caregiving with their partner, whereas men were more likely to indicate that they shared caregiving responsibilities when their partner was employed full-time, χ 2 = 7.64, p = .02. We also conducted further analyses to determine whether meaningful variance was lost when the item that assessed sharing caregiving responsibilities was dictomized. Specifically, we retained a 3-point measure, which compared women who were "primarily responsible" for caregiving to women who were "somewhat primarily responsible" for caregiving to women who "shared" caregiving responsibilities with their partner. The same pattern of results reported in the main analyses were found. That is, there was no moderation effect of sharing caregiving responsibilities on child caregiving responsibilities and both job outcomes . --- Discussion Meeting the responsibilities of caregiving while maintaining a career in academia poses unique challenges for women compared with men. The tenure track system is modeled on an ideal worker who is able to devote themselves fully to their job, which creates challenges for all parents in the 1 3 for caregiving or shared responsibilities with a partner, they were more likely than men to report that professional life interferences due to caregiving negatively affects their careers. This finding is consistent with previous research that has found women, regardless of a position in or outside of academia, report more caregiving for children than men . We predicted that partner support for caregiving would mitigate the negative effects of professional life interferences on career outcomes for pre-tenure women compared with pre-tenure men. However, unexpectedly, sharing caregiving responsibilities with a partner did not buffer the adverse effects of caregiving for pre-tenure women's desire to stay in their position or career satisfaction. One possibility that partially explains this finding is that pre-tenure women were more likely to have partners who were employed full-time compared to pre-tenure men. Specifically, men's partners were more likely than women's partners to hold part-time or no employment . Moreover, men with partners who were unemployed and employed part-time were more likely to indicate that their partner primarily handled caregiving than sharing caregiving equally. However, this was not the case for women. Women were equally likely to indicate that they were primarily responsible or equally responsible for caregiving when their partners were parttime employed or not employed . Given that partners who unemployed or hold part-time employment may have more time available to provide care for children, this employment status difference between women's and men's partners may help explain why women's careers were relatively unaffected despite sharing caregiving responsibilities with a partner. Moreover, pre-tenure women reported more professional life interference due to caregiving than men, regardless of whether they equally shared caregiving responsibilities with a partner. --- Limitations and Future Directions This study makes important contributions to our understanding of managing the demands of caregiving in academia, and future research can build from this study's limitations. One of the major limitations of this study is that results may not extend to faculty members' lives outside of researchintensive institutions. Faculy members in this study were sampled from one research-intensive university in the U.S. Despite the potential for limited generalizability, the institution sampled resembles many other line with both the role incongruity and lack of fit frameworks, pre-tenure women, but not pre-tenure men, reported less intention to stay and lower career satisfaction when they experienced a relatively small number of professional life interferences due to caregiving . The power of gender norms for men that support the single-minded pursuit of career advancement, in contrast to the conflict between ideal worker norms and gender norms for women, led us to expect this pattern. During this early career and parenting period the conflict women experience interferes with their careers, while freedom from that conflict precludes that for men. Thus, pre-tenure men's desire to stay in their position and career satisfaction remained high, regardless of the number of caregiving responsibility interferences they experienced. The accumulation of professional life interferences was not associated with pre-tenure men's career outcomes. For all other groups of faculty , as the number of professional life interferences increased, their intention to leave increased and career satisfaction decreased, but this was not the case for pre-tenure men. Consistent with the literature on gender norms, men at both the pre-and post-tenure career stages reported fewer professional life interferences compared to women at both career stages. At the post-tenure career stage, the relationship between professional life interferences and career outcomes did not differ between women and men. However, both women and men reported greater intention to leave and lower career satisfaction when they experienced more professional life interferences. This parallel in men and women faculty's responses at these later career stages may indicate that after tenure men are more willing to engage with family life at the expense of work, or that their partners are more determined that they do that . Consistent with this possibility, in this study, 57% of tenured faculty reported sharing caregiving responsibilities with a partner and 43% said the women was primarily responsible . At the same time, it is important to recognize that posttenure faculty reported fewer professional life interferences than pre-tenure faculty. Perhaps this is because children are older at this career stage. Thus, faculty who have obtained tenure may be able to accommodate the fewer interruptions from work than when children are younger. Given that professional life interferences negatively affected pre-tenure women's intention to leave and job satisfaction, we examined whether sharing caregiving responsibilities with a partner mitigated the negative relationship with professional life interferences on career outcomes. Regardless of whether women were primarily responsible the rate at which faculty reach promotion beyond tenure. Research suggests that men are more likely to obtain tenure than women and reach promotion to full professor status quicker than women . Among parents, women and men who use a tenure clock extension for caregiving obtain tenure on similar timelines; however, women are later disadvantaged and take longer to reach full professor status . To date, research has not yet identified why it takes women longer to reach full professor status. Some scholars suggest that men could be using parental leaves to focus on scholarly pursuits , however, qualitative research does not support this notion . Moreover, it is unclear how child caregiving responsibilities and partner support for sharing caregiving responsibilities affect rates of promotion among faculty members-especially within the context of the COVID-19 pandemic and lack of childcare resources. Future researchers and academic administrators should consider ways in which institutions can support academic parents , including tenure clock extensions that many academics, especially parents, may have used during the pandemic . Likewise, rsearchers and administrators should be mindful of possible later downstream consequences of tenure-clock extension policies on women's career advancement. Future research should also consider the potential bias embedded within asking people to rate their parenting responsibilities in comparison to each other. For instance, people tend to evaluate men and women differently based on gender stereotypes, setting the standards for women's caregiving higher than men's caregiving . Specifically, the reference point for men's caregiving involvement is arguably low, which could create a larger perceived difference in caregiving expectations for mothers and fathers. Perhaps this tendency for shifting standards in parenting responsibilities influenced faculty members' reporting of their own and their partners' parenting behaviors. Moreover, there could be individual differences in what people believe constitutes shared responsibilities. Thus, future research should examine the type and quality of caregiving tasks in more depth. Related, very few faculty members indicated that men were primarily responsible for caregiving. Thus it is likely that men benefit from an unrestricted range of support , whereas the maximum support that women receive may be "equal support" from their partners . Thus, the fact that our measure is based on perceptions of shared responsibilities that may be influenced by gender norms could partially explain why sharing parenting responsibilities did not attenuate the relationship between large public universities in terms of size, gender composition, and other related dimensions. It is possible, though, that faculty members who took part in the study differed in their perceptions of workplace climate or job outcomes compared to faculty members at small liberal arts colleges or research-intensive universities in other geographic locations in the U.S. Moreover, it is possible that faculty members who took part in this study differed from those who declined. Arguably, faculty members who are unhappy in their current positions or have been treated unfairly may have been less likely to participate in this study for fear of being identifiable. Thus, both of these limitations should be kept in mind when considering the results of this study. Future studies could also examine the various ways caregiving responsibilities can influence faculty members' career outcomes, especially during the COVID-19 pandemic. Data collection occurred prior the COVID-19 pandemic; thus, future researchers should consider the unique strain that academic parents endured while managing their careers during the pandemic. For instance, recent research has shown that women's productivity was acutely affected during the pandemic, including fewer first-authorship preprints and published papers than men . Future research should also consider the other ways in which caregiving can interfere with professional life during the pandemic. For instance, prior to vaccine availability, parents were stimultaneously managing their careers while caregiving and helping their children remotely learn from home . It is very likely that interferences, like work interruptions or the inability to accept advancement offers, were more frequent during this time and could have long-term effects on faculty members' career outcomes. Moreover, research has shown that the pandemic exacerbated gender inequality, as women were more likely to take on greater amounts of caregiving and household labor . Thus, in a similar vein, future research should consider an assessment of caregiving responsibilities that takes into account various aspects of caregiving, such as feeding, bathing, or virtual schooling . Assessing these different aspects of caregiving could illuminate responsibilities that are of greater importance to or uniquely affect career outcomes. This type of nuanced caregiving assessment would address the present study's measurement limitation, as we used a global assessment, instead of a nuanced assessment of caregiving. Moreover, understanding how academic parents navigate child caregiving responsibilities during the COVID-19 pandemic would be beneficial to better understand career outcomes that may have a lagged effect and contribute to advancement disrecepancies among women and men. One key factor that should be considered in future work is 1 3 parents the ability to achieve goals toward tenure while caregiving. To the best of our knowledge, this does not appear to be an available option at any U.S. institution for tenure track faculty members. Based on the present study's findings, many pre-and post-tenure parents indicated that their professional travel had been curtailed due to caregiving responsibilities. As such, institutions could develop travel programs or policies to support faculty members who are parents. Some institutions provide academic parents a stipend to travel with children or to cover expenses related to home care for research and professional engagements . This type of institutional support could minimize the negative effects that caregiving demands have on faculty members' careers. Taken together, efforts to re-examine existing family-friendly policies and programs would benefit all parents in academia, especially women during the early years of their career-and help challenge the notion that motherhood is incompatible with an academic career. --- Conclusion In sum, our study demonstrated that caregiving for children affects faculty members' professional lives in a variety of ways, particularly pre-tenure women's. We expanded on research that examined gender differences in the publication records of academic parents by examining other ways in which caregiving can affect faculty members' lives, such as having professional travel curtailed due to caregiving responsibilities. Our results show that, compared to pre-tenure men, pre-tenure women are more likely to express a desire to leave their job and report lower career satisfaction when they experience a relatively low number of professional life interferences . In fact, pre-tenure men's career outcomes are relatively unaffected by professional life interferences due to caregiving. This gender difference disappears among tenured faculty members. Instead, increased professional life interferences are associated with decreased career satisfaction and increased intention to leave for both post-tenure women and men. Although some research suggests that the negative effects of child caregiving responsibilities on women's careers may be mitigated by sharing caregiving responsibilities , we did not find evidence for this in the current study. Taken together, these findings underscore the important role that institutions can play to support the needs of parents, particularly women, in academia. pre-tenure women's professional life interferences and their job outcomes. Future research would benefit from an assessment of parenting responsibilities that directly assesses partner sharing practices. Finally, researchers should consider how caregiving strains may play out differently in dual-career academic couples as well as positive aspects about caregiving. For example, previous work has shown that among dual-career academics, women reported spending a higher percentage of time on caregiving as well as household tasks relative to their partners . Thus, researchers should also consider ways in which policies and institutional support related to childcare may be particularly beneficial to dual-career academics. In addition, this study focused solely on how caregiving can adversely impact academics' professional lives. Previous research has demonstrated that parenting can positively influence one's academic career, including becoming more efficient in work and changing one's perspective on career and family life . Our research demonstrates that it also has adverse effects, at least under some conditions. It is important for future research to balance attention to the positive and negative effects in the same study. --- Practice Implications Our study sheds light on policy implications for college and university administration. Our results highlight how women, but not men, who are parents are often disadvantaged during the pre-tenure years-a time that is critical to one's academic career. Ample research has documented the benefits of policies and programs aimed at helping parents navigate career and family life, including direct employer benefits and the ability to recruit and retain diverse applicants . Academic institutions play a valuable role in fostering women's career success with family-friendly policies . Taken together, family friendly policies and programs at academic institutons could further help support faculty members, especially pre-tenure women. In addition to common policies that support tenure track parents, such as tenure clock extensions or paid leaves, institutions could also consider developing other types of programs or policies to better support academic parents. For instance, family-work scholars have proposed the idea of a half-time tenure track option, which would allow faculty members with caregiving responsibilities to have their workload reduced by half for a period of time. This type of reduced workload could provide academic 1 3 --- Data Availability Survey data from the present study is available upon request. The survey instrument used in the present study can be located here: https://advance.umich.edu/research ---
Navigating a career while raising a family can be challenging, especially for women in academia. In this study, we examine the ways in which professional life interruptions due to child caregiving (e.g., opportunities not offered, professional travel curtailed) affect pre-and post-tenure faculty members' career satisfaction and retention. We also examine whether sharing caregiving responsibilities with a partner affected faculty members' (particularly women's) career outcomes. In a sample of 753 tenure track faculty parents employed at a large research-intensive university, results showed that as the number of professional life interruptions due to caregiving increased, faculty members experienced less career satisfaction and greater desire to leave their job. Pre-tenure women's, but not pre-tenure men's, career satisfaction and intention to stay were negatively affected when they experienced at least one professional life interference. Pre-tenure men's desire to stay in their job and career satisfaction remained high, regardless of the number of professional life interferences they experienced. Sharing parenting responsibilities with a partner did not buffer the demands of caregiving on pre-tenure women's career outcomes. Our work highlights the need to consider the varied ways in which caregiving affects faculty members' careers, beyond markers such as publications, and how institutions can support early career stage women with family-friendly practices.
Definition of "ritual" and "interactive ritual" From a phenomenal point of view, ritual is a physical activity and behavior that would be generally accepted by people in a group and carried out according to certain established procedures. From the perspective of communication, ceremony itself is a full and outstanding cultural exchange behavior of human beings. Through the ceremony, people transmit emotions, exchange ideas, share values, promote unity, confirm order, strengthen identity, and promote integration. Since the birth of mankind, ritual, as a "collective art", is the most important and oldest form of communication. Because "our senses react to the world in a meaningful, skilled, creative, positive and shared way. This reaction is called 'collective art' ." While the term "interaction rituals" originated from the American sociologist Owen Goffman, and refers to a procedural activity that expresses meaning. He explored the interaction in people's daily life from a micro perspective, pointing out that not only religious rituals have the emotional energy, but also performance rituals in social activities. His concept of "interactive ritual" expanded the study of ritual from the scope of religious sociology to daily life. Then, Randall Collins inherited his ideas, systematically elaborated the elements and the operating mechanism of ritual, and put forward the theory of "interactive ritual chain". He took the phenomenon at the micro level as the research basis, and tried to analyze it in combination with the macro structure. He clearly pointed out the elements of the interactive ritual chain: "group gathering, exclusion of the barriers of outsiders, mutual focus, shared emotional state." These elements form a rhythmic feedback cycle, in which mutual attention and emotional connection would be regarded as the core mechanism. And the combination of the two can have symbols representing groups and give participants emotional energy. --- Interaction rituals and "emotional awakening" Modern psychology highlights that emotion is a 'purposeful' phenomenon. Therefore, it can be expressed as a cognitive state including beliefs, judgments, reasons and thoughts. Also, each emotion expresses the subject's special internal drive, instincts, needs, motivations, goals or expectations. And human beings are the most emotional animals on the earth. Almost every aspect of human cognition, behavior and social organization is driven by emotion. In interpersonal interaction, emotion is the power hidden behind the social commitment to others. Not only that, emotion is also the power that determines the formation of social structure". However, for emotion is secret, private and individual, it is not easy to detect, so it needs to be stimulated and awakened. In Collins' view, the main purpose of interaction rituals is to awaken emotions, and the most basic reasons for emotional awakening are expectations and rewards and punishments. Expectation leads to need, a certain state of need is the fundamental force to motivate people to act. And this state of need can't help awakening emotions when shaping social culture. Everyone needs to be recognized and recognized by others when living in the society, which is the most powerful guarantee for forming oneself and getting ahead. As an expert said, the social emotional energy generated in the ceremony is a feeling of confidence, courage to take action and boldness. It is a kind of energy with moral significance, while it makes everyone feel not only good, but also noble, and that what they do is the most important and valuable thing. In addition, it creates common emotions and symbols, forms a sense of membership and collective belonging associated with emotional symbols, and also provides a basis for social trust and social solidarity. --- "Interactive ritual" and emotional communication and the construction --- Initial period: creating interactive situation under the guidance of media In the initial stage of the dynamic communication of mass emotions, the media, after acquiring information, will build a framework to produce and disseminate emotions. After being transmitted through the media, the initial conditions for the interaction rituals to occur are formed. What's more, the public realizes group focus , and forms focus on the same thing, then shares an emotional state, as well as creating a situation for emotional dynamic communication. Since then, the situation exists in each link of dynamic communication, forming a strong and weak effect on the majority of the public and the minority of the public . In the initial stage of mass emotional communication, the media laid the foundation for the occurrence of interactive rituals, and played a guiding role in the situational atmosphere and emotional trend. Because of that, the media should properly understand the link of intervention, then transform into the role of social service provider on the basis of listening to the public opinion, and gently ease the public's emotional confusion. In terms of behavior, it is necessary to build a public discourse platform, and relieve public anger with appropriate expression, so that rational public discussion can become an effective means of emotional self purification. In the end, we would guide the public to achieve emotional return with an attitude, temperature and rational framework of reporting. --- Climax period: "superposition effect" under the action of situation At the climax of emotional dynamic transmission, two transmission paths are carried out simultaneously. And one path is hosted by a minor number of people , who would be release their views through the platform, quickly attract the public, and then host the interaction rituals. While the other path is that the situation strongly affects the majority of the public. Under the interweaving effect of the media, cognition, keynote emotion and state emotion, the majority of the public forms their views. Immediately, the views of opinion leaders and the views of the majority of the public completed an interaction rituals in the excitement, gathering emotional consensus, stimulating more consistent views, thus promoting the emergence of collective behavior. In the process, the most noteworthy is the intertwined evolution process of the formation of the majority of public views, that is, the four elements of media, cognition, keynote emotion and state emotion evolve circularly in the situation, then stimulate each other, and constantly promote each other, forming a "superposition effect". The relationship between the four elements, which influence and shape each other, directly affects the formation of views and interactive participation in the climax stage. The "superposition effect" exists not only in specific events, but also in the long-term evolution of the dynamic communication of public emotions. Therefore, to grasp the emotional trend of the climax stage of the dynamic spread of public emotions, we need to improve the public cognition level to ensure the rationality of "existing cognition", and we need to be alert to the changes of "specific cognition" in public opinion emergencies. Furthermore, we should not only control the correct orientation of the "keynote emotion" as the social macro emotional atmosphere, but also ensure that the temporarily stimulated "state emotion" orderly category. --- Feedback period: emotional consensus leads to collective action In the feedback stage of emotional dynamic communication, after the collective excitement, the interaction rituals, on the one hand, strengthens the opinion of the opinion leader, so that the opinion leader can get emotional energy feedback, and starts a new round of interaction rituals. On the other hand, it has the effect of mobilizing and strengthening collective behavior, which makes the public feel that their behavior meets the requirements of social morality, thus opening the "emotional cycle" mode. In a sense, the emotional attitude and goal strategies presented by opinion leaders in the events will directly affect the public's emotional orientation and opinion judgment Finally, it determines the direction of collective action. Therefore, the continuous accumulation of social "keynote emotions", the authoritative guidance of opinion leaders and the instantaneous outbreak of collective emotions are often taken as prerequisites in the process of the final transformation of emotional consensus into collective action. First of all, the formation of emotional consensus to consensus requires the accumulation of social "keynote emotions" as a prerequisite and prerequisite, which is also the first stage of collective action. The accumulation of social "keynote emotion" is the most basic condition for the realization of emotional consensus. Emotional consensus is the emotional consensus tendency formed by the public in response to emergencies. It is a composite product of sensibility and rationality. However, no matter what complexity the public emotion presents in the interaction rituals, it is based on the accumulation of social "keynote emotion" as the basic condition of psychology. Any rational calculation is a tool based on the accumulation of social "keynote emotion", and the source of any large-scale collective action event is due to the continuous gathering of a certain "keynote emotion" in the space of public opinion. Moreover, the instantaneous outbreak of collective emotions pushed the event to a climax, which became the fuse to induce the public to finally take collective action. In the final stage of the interaction rituals, the public emotions erupted collectively, which was mainly reflected in the collective emotional exaggeration, overflow, and even out of control. The members of the group have the same identity, consistent views, belief values, and strong emotional connections. Through sharing, they transform into long-term emotions -"emotional energy", which makes the minority promote events more and more intense in order to obtain high emotional energy. The root cause is that some emotions can trigger the outbreak of collective emotions, which is the product of the long-term accumulation of many social problems. Whenever public events touch the bottom line of public emotion, emotion is no longer a personal experience, but a product of social reality. Long term overstocked emotions will pour out on the surface of the event, and stressful state emotions will appear. Therefore, emotion is the energy to maintain and change social reality, which has an important effect on social structure and culture. Jonathan Turner, a sociologist of sense, pointed out that "in the most fundamental sense, a country is formed by the positive emotions that people point to social structure and culture. If there is a micro basis for social order and change, it is the emotion that people awaken from the interaction process nested in the middle and macro structure. Finally, there is no doubt that grasping the dynamic propagation law of mass emotion is to achieve emotional regression and build a new era of emotional literature. All social relations in real life are reflected in emotional phenomena, and the dynamic communication of public emotions is based on material life, social background and public activities. We must consider the variable of emotion in the specific historical conditions, and build it in the coordination and unity of social control mechanism and emotional empowerment. What the public really needs is a kind of quality and ability, which can help the public to screen information rationally and see things clearly. As the watchman of the society, the media should understand the intervention in the link and realize effective emotional communication and rational reporting on the basis of actively listening to public opinion of the bottom. In terms of occupancy, we should change the condescending elitism attitude, return to the role of serving the society, and gently ease the public's emotional confusion. In terms of behavior, it is necessary to build a public discourse platform, and assuage public anger and dissatisfaction with appropriate expression, so that rational public discussion can become an effective means of emotional self purification. Finally, with the guidance of attitude, temperature and rational wisdom, we will fully ensure that the emotional civilization will step to a new level in the interaction rituals. --- ASSSD 2022 Volume 21 --- ASSSD 2022 Volume 21
Human emotion is a meaningful form of symbolic communication in terms of its transmission. And it is the basic supporting force and creative force of mankind. Also, emotions need to be stimulated, interacted and shared. Through the stage of "interaction rituals", on the one hand, a new interactive emotional space of sincerity, equality and respect has been created; on the other hand, a new emotional culture has been displayed, spread and constructed, which has played an important role in shaping emotional civilization, promoting social unity and building public emotions.
FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 4 much more widely accepted social norm in Western countries; in the U.S., for example, more than 25% of children are expected to live in a cohabiting family during some point in their childhood . Although 69 percent of American children under age 18 live in families with two parents, 23 percent of children in the U.S. live with a single mother . In the U.K., 64 percent of children live with their married parents, 15 percent live in cohabitating families, and 21 percent live in single parent households . Family structure is associated with differences in child and adolescent emotion problems, behavior problems, delinquency, and substance abuse . Single parenthood is linked with risk factors for child and adolescent maladjustment . Relatedly, father absence has been identified as a contributing factor to adolescent adjustment problems . For example, Mason et al. examined the effects of father absence and the quality of the motheradolescent relationship on adolescent problem behavior. Father absence moderated the risk of peer problem behavior; however, a positive mother-adolescent relationship served as a protective factor against this risk . Based on the National Longitudinal Study of Adolescent Health, Booth et al. examined the effects of father absence and presence with closeness of the father-adolescent relationship on adolescent outcomes. Adolescents who were emotionally close to their nonresident fathers reported higher self-esteem, less delinquency, and fewer depressive symptoms than adolescents who lived with a father with whom they were not close . Adolescents living with a father with whom they were not close had better grades and engaged in less substance use than those having a nonresident father with FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 5 whom they were not close. The best overall adolescent outcomes were associated with having close relationships with present fathers. There is a growing consensus on the impact fathers have on adolescent development . The impact of fathers on child and adolescent adjustment is also documented in the context of interparental conflict . Broadly, family conflict has been linked with adolescent adjustment problems . Marital and family conflict are salient aspects of the quality of the family environment for adolescent adjustment across a wide range of ages and settings . For example, Amato & Keith conducted a metaanalysis which implicated parental absence as a factor in child outcomes, yet the most consistent support was found for a family conflict perspective, which posits that conflict between parents before and during separation is a critical stressor for children, and such hostility among parents leads to an aversive home environment in which children experience stress and insecurity. Family conflict may be different among two-parent families, single parent families, and families that experience marital transitions. According to the Fathering Vulnerability Hypothesis , father-child relationships may be more negatively affected by interparental conflict than mother-child relationships. Despite the increased attention on fathers, relatively little is known about the significance of father presence and family conflict on adolescent well-being in contexts of high environmental adversity. In the present study, which focuses on families with adolescents in socially deprived neighborhoods in Belfast, Northern Ireland, families were faced simultaneously with two types of environmental adversity: low family income and exposure to political conflict. Therefore, these families provided a cogent test of the significance of fathers' role in contexts of FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 6 substantial environmental adversity. Notably, the focus in sample selection in this research was on families with preadolescent and adolescent youth since this demographic was posited to be most directly exposed to political conflict and more likely to contribute as actors over time to the intergenerational transmission of sectarian violence. The context of political conflict in Belfast between 2006 and 2012 provided a unique setting for studying the effects of political conflict as a form of environmental adversity on youth's adjustment. Although the roots of this conflict can be traced back for centuries, the most recent concerns focus on the 30-year period With regard to developmental considerations, adolescents in the age span of this study are not merely passive victims of sectarianism, but may be active participants, for example, in protests, rioting, and other forms of violence . Moreover, in Northern Ireland in the period of this study, as paramilitary organizations were disbanded, the evidence indicates that adolescence have enhanced likelihood of involvement in sectarian conflicts. That is, young people, unaffiliated with such organizations, FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 7 have evidenced increased activity in sectarian rioting and crime . For example, a study by McAloney et al. indicated that over three quarters of adolescents in Belfast in this period had experienced violence in their communities reflecting a social and psychological legacy of the Troubles. Problems for youth associated with political violence and armed conflict have been identified worldwide . Moreover, links are reported between environmental adversity associated with political violence and armed conflict, family processes and psychopathology in adolescence. For example, supportive, non-punitive parenting has been associated with youth adjustment whereas inconsistent parenting and psychological control has been related to higher levels of psychological symptoms . Family cohesion has been linked with youth adjustment whereas family conflict is associated with youth maladjustment . In longitudinal studies, family processes have been repeatedly identified as predictors of youth adjustment in contexts of political violence and armed conflict . Thus, the literature indicates that the study of relations between these elements of environmental adversity, family processes, and youth adjustment holds promise for may improve understanding youth adjustment in across multiple contexts of political violence and armed conflict. The present study tests whether family conflict in the context of father presence or absence is associated with adolescents' internalizing or externalizing problems. Research has not taken advantage of the opportunity to explore both within-and between-family effects, which has the potential to advance better understanding of the impact of these family processes on adolescents' socioemotional functioning . This study examines both within-and between-family effects related to the impact of father absence and family conflict on FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 8 adolescent adjustment. Between-person effects assess whether youth experiencing father absence or higher levels of family conflict are more likely to develop adjustment problems than youth experiencing father presence or lower levels of family conflict. Thus, between-person analyses make comparisons across the sample. In contrast, within-person tests allow for detection of how change occurs relative to that individual's own baseline measures. Approaches that model individual or within person changes over time inform person-oriented conceptualizations of change . The multi-level modeling approach we used applied to a six-wave longitudinal study supports insights into these different processes. Over the many waves of data collection, family structure varied, with father presence included as a time-varying predictor. This approach allowed us to account for the impact of father presence even as some families underwent transitions. Family conflict was also included as a time-varying covariate predicting adjustment outcomes. Finally, adolescent gender was included as a covariate because differences between boys and girls in internalizing and externalizing symptoms are frequently reported . Based on an extensive body of research , we hypothesize that father presence will be linked with reduced adjustment problems and that family conflict will be associated with elevated internalizing and externalizing problems. --- Method Participants The data come from a 6-year longitudinal survey of mother-adolescent dyads in Belfast, Northern Ireland. Mothers and one adolescent from the family were surveyed annually. For households with more than one child, the youngest child eligible for participating was selected. --- FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 9 This allowed the maximum amount of time families could be followed before a child left home. About half of the participating adolescents had older siblings, whereas the other adolescents were eldest or only children in the family. At time 1 of data collection, 695 dyads were surveyed; a supplemental sample was added at time 3, so that the total number of unique family dyads across the six years totaled 999. Mothers were selected instead of fathers because many households in working-class Belfast are headed by single mothers, and mothers are more likely to be available for in-home surveys. Our sample was exclusively White, consistent with the Northern Irish population of ethnic Catholics and Protestants. At time 1, the adolescent ages ranged from 8-17 . The means and standard deviations of age for each time point are displayed in table 1. The adolescent gender distribution for the total sample is approximately 48% male and 52% female. A characteristic of this particular community sample is that participants who miss a wave of data collection do not necessarily drop out of the study entirely, but return for a later wave of the study. Between any two time points, approximately 80% of the families returned across the 6 waves of the study, a rate of retention that compares well to comparable high-risk, longitudinal samples, with retention rates in these studies ranging from 50% to 86% . Moreover, including participants from any previous wave, 78% returned at wave 2, 85% at wave 3, 76% at wave 4, 94% at wave 5, and 101% at wave 6. The selection of neighborhoods was informed by analyses of representative neighborhoods and family structures by an expert demographer on the ethnic composition of Belfast. Families for this study were selected using stratified random sampling across 18 socially deprived areas of Belfast. This process was designed to ensure proportional sampling of families within Protestant and Catholic areas similar in terms of socioeconomic status and at risk for FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 10 sectarian violence due to proximity to the opposing community. Approximately 35 families were randomly selected from specific wards in Belfast with homogenous ethnic groupings . Our sample was representative of the overall population in Belfast . The Belfast communities in this study were all highly segregated by ethnicity, such that residing in a Catholic or Protestant neighborhood was tantamount to being Catholic or Protestant, respectively. Additionally, the demographer also considered the spatial location of interface "peace" walls, as families living in communities adjoining an interface are likely to experience higher levels of violence compared to families in communities separated by buffer zones. All of the study areas had at least one boundary between it and a community of the other ethnicity. Moreover, the demographer selected neighborhoods in the survey with the goal of limiting differences in socioeconomic status. All neighborhoods selected were in areas associated with the Troubles in Northern Ireland and were in the bottom 20 th percentile in a social deprivation measure calculated by neighborhood in Northern Ireland . --- Measures Family structure and father presence. Family structure and father presence was determined by reported maternal marital status. Mothers were asked to report their marital status as "married", "cohabitating", "separated", "divorced", or "single ". Based on these responses, families were determined to be single-parent or "coupled" at each wave across the study. When marital status was not reported, observations were excluded from the analysis. Table 2 shows numbers for single-parent families and fatherpresent families at each time point. --- FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 11 Internalizing and externalizing symptoms. Adolescents completed the Strengths and Difficulties Questionnaire , which contains subscales for emotion problems, peer issues, conduct problems, and hyperactive behaviors . Each subscale contained five items. Adolescents responded to each item with 0 , 1 , or 2 . Example items include "I am often unhappy, down-hearted, or tearful" and "I get very angry and often lose my temper" . The SDQ has well-established use among community samples in the UK . The emotion and peer subscales can be combined to assess internalizing symptoms and the conduct and hyperactivity subscales can be combined to assess externalizing symptoms . For internalizing and externalizing scores, each 0 to 2 answer was summed, so that internalizing and externalizing scores ranged from 0 to 20. The items for the internalizing scale had an average reliability of 0.62 across all data collections . For internalizing symptomatology, the reliability coefficient for wave 1 was 0.61, 0.60 for wave 2, 0.57 for wave 3, 0.62 for waves 4 and 5, and 0.59 for wave 6. The items for the externalizing scale had average reliability of 0.69 . For externalizing symptomatology, the reliability coefficient for wave 1 was 0.70, 0.68 for waves 2 through 5, and 0.61 for wave 6. Although relatively low internal consistencies for the subscales of the SDQ are reported , the aim in scale construction was choosing items to maximize clinical significance as well as statistical consistency. Consistent with these goals, Goodman and Scott report the SDQ subscales correlated more highly with interview-based ratings of clinical symptoms compared to the CBCL, and discriminated between high risk and low risk samples, further supporting criterion validity. Table 3 displays means and standard deviations at each age. --- FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 12 Family conflict. Adolescents reported their perceived level of family conflict by completing the Family Environment Scale -Conflict subscale . The FES conflict subscale is a 9-item true-false survey that assesses the extent to which conflict is frequent and/or intense in the family. Sample items include "we fight a lot in our family" and "people in my family sometimes hit each other." Answers were scored as 0 for false and 1 for true, with a possible scale range from 0-9. The 9 items for the FES Conflict subscale displayed an average  coefficient of 0.62 across all measurement occasions . Table 3 Boards at all participating universities. Families participating in the study were given monetary compensation for their time. Families received £20 for participation at times 1 and 2, £40 at times 3 and 4, and £50 at times 5 and 6. --- Analytic Rationale Multilevel modeling was used to model longitudinal trajectories of adolescent adjustment. Multilevel modeling was chosen because it permits a flexible specification of the timing variable in the longitudinal model. Due to variation in the ages of adolescents across FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 13 measurement occasions, adjustment trajectories were modeled over the range of all participants' ages, rather than modeling trajectories across specific measurement occasions. Multilevel modeling also allowed for time-varying and time-invariant predictors to be included in the models. Father presence was included as a binary time-varying predictor, so that adolescents were not fixed in single-parent or two-parent families but could change between the family types over time. Family conflict was included following the approach by Hoffman and Stawski to disaggregate the within-and between-person effects of family conflict. Consistent with this approach, relations between family conflict and adolescent adjustment were assessed in terms of between-person effects, that is, comparisons of levels of conflict across families ; and between-person effects, comparisons of levels of conflict over different ages in the study for individual adolescents . The disaggregation approach isolates the effect of different conflict levels across families and the effect of change in conflict within families. First, mean levels of family conflict across all measurement occasions were calculated for each adolescent. Second, time-varying scores were determined for each adolescent by centering their scores over time around their person-mean. The centered family conflict values provided an indication of the current level of family conflict relative to each individual's average level of family conflict. The person-mean levels of family conflict indicated each family's average level of conflict for the study. The interaction of father presence with both sources of variability in family conflict was included to test for moderation effects. Finally, adolescent gender was included as a covariate because differences between boys and girls in internalizing and externalizing symptoms are frequently FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 14 reported . Analyses were carried out with SAS PROC MIXED using full information maximum-likelihood estimation to handle missing data. --- Unconditional Models Models of symptom trajectories without covariates were fitted as a first step. Unconditional growth models of intercept-only, linear change across age, and quadratic change across age were fitted for both internalizing and externalizing symptoms. These models established the type of growth trajectory used in the conditional modeling. --- Conditional Models A series of conditional models were fitted in step-wise fashion to evaluate the hypothesized predictors. This same series of models was carried out with internalizing scores and externalizing scores as the outcome variable. The first conditional model, labeled Model A, was a linear growth model across age with gender included as a level-2 covariate, with random effects included for both the intercept and the age slope. Model B added the main effect of father presence. Model C added a father presence by age interaction term to see if adolescents with and without fathers in the home had different average trajectories of symptoms. Model D added the effects of both within-and between-person family conflict. Model E tested for moderation effects of father presence on the impact of family conflict on adjustment outcomes. This was accomplished by including interaction terms between father presence and both within-and between-person variables of family conflict. Model F no longer included the moderation interaction terms, but allowed for random effects of within-person family conflict. This variance component assesses whether there were individual differences in how fluctuating conflict scores FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 15 over time impacted individual adolescents. Models in which both random effects of family conflict and interaction effects were estimated did not converge. The final model has the form: Level 1: Level 2: where represents internalizing or externalizing symptoms for person at age , the are level 1 regression coefficients, is the residual term, represents level 2 coefficients, and represents the random effect around the level 1 coefficients. In this model, the variances and covariances of the random effects were unstructured, as seen in the covariance matrix of . --- Results Figures 1 and 2 display average rates of externalizing and internalizing symptoms by father presence. The graphs supported the use of a linear trajectory, with symptoms decreasing on average over time. For adolescent internalizing symptoms, there was a visible gap between father presence and father absence. However, this difference was not observed for externalizing symptoms. Table 4 displays the estimates and fit statistics for the unconditional models. The linear models fit better than the intercept only models based on difference tests of the -2 Log FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 16 Likelihood of the models. The quadratic models did not fit significantly better than the linear models. Therefore, linear growth was fitted in the conditional models with predictor variables. Internalizing symptoms. Table 5 presents the results of all models and model comparisons when predicting internalizing symptoms. Model F was shown to be the best model overall according to sequential difference tests = 10.7, p <0 .05 compared to the nextbest fitting model, see Table 5). This model included main effects of age, father presence, within-family levels of conflict, between-family levels of conflict, and gender. Additionally, the model included a random intercept, random slope for age, and random slope for within-family conflict. In this final model, adolescents showed an average linear decline in internalizing symptoms over adolescence, γ10 = -0.148, p < 0.001, indicating a slight decrease in symptoms with each year. The random effect component for age was not significant, σ1 2 = 0.021, ns, indicating that the trajectory of symptoms was fairly stable across adolescents as they get older, given the other variables in the model. Father presence had a main effect on internalizing symptoms of γ20 = -0.344, p < 0.01, meaning that at any given age, father presence in the home predicted fewer internalizing symptoms, accounting for gender, age, and family conflict. At timepoints when families had more conflict compared to their average, youth reported higher internalizing symptoms, γ40 = 0.182, p < 0.001 . The random slope component of current levels of family conflict was small but significant, σ2 2 = 0.096, p < 0.01. This indicated that there were individual differences across adolescents in terms of how the relative levels of conflict in their families impacted their internalizing symptoms. Betweenfamily levels of family conflict also predicted more internalizing symptoms, γ02 = 0.242, p < FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 17 0.001, meaning adolescents from families with more conflict on average reported higher rates of internalizing symptoms compared to those from families with less conflict. Additionally, there were no significant differences in internalizing symptoms across gender in any of the models. Compared to baseline Model A, Model F indicates an R 2 increase at level 1 of 0.04 and at level 2 of 0.07 . Externalizing symptoms. that adolescents decreased slightly in symptoms with each year after controlling for the other covariates. The variance component for the rate of change was not significant, σ1 2 = 0.024, ns, indicating that there were not significant individual differences in the rate of change for externalizing symptoms. The main effect of father presence on externalizing symptoms was marginal and not significant, γ20 = -0.191, ns. Within-person levels of family conflict, relative to one's average level of family conflict, were associated with increased externalizing symptoms, γ40 = 0.386, p < 0.001. There were again significant individual differences in the effect of changes in withinfamily levels of conflict, indicated by a significant variance component for the within-family conflict slope, σ2 2 = 0.205, p < 0.001. Average levels of between-family conflict also predicted increased externalizing symptoms, γ02 = 0.553, p < 0.001, so that adolescents from families with more conflict on average reported higher rates of externalizing symptoms. Compared to baseline Model A, Model F indicates an R 2 increase at level 1 of 0.13, but level 2 R 2 change is -0.0009 when adding the additional random slope for family conflict estimates . --- Discussion Results of the current study contribute to the body of work on the impact of fathers' presence, as well as the effects of family conflict, on adolescent adjustment in contexts of environmental adversity. Father presence in the home was linked with reduced internalizing symptoms, whereas family conflict was related to both elevated internalizing and externalizing problems. These results thus support the importance of the father's role in adolescent adjustment in adverse contexts, particularly adolescents from low income families in communities marked by social deprivation and political violence. Father presence predicted fewer internalizing symptoms at any given age across adolescence, but father presence was not associated with reduced externalizing symptoms. These findings are consistent with reviews supporting the importance of father presence to youth adjustment. For example, based on their review, Tamis-LeMonda and McFadden argued that there are "countless empirical studies that show children who experience absent fathers are more likely to confront an array of risks that compromise their well-being…and the idea that fathers matter only in certain economic contexts and that economic context rather than fathers per se matter are equally flawed" . Similarly, Panter-Brick et al. contended that "when it comes to fathers, our knowledge on empirical associations between fathers' involvement in raising children and the health and educational outcomes of children is quite consistent -fathers have a substantial impact on child development and wellbeing" . The present findings thus reinforce findings supporting the importance of father presence in contexts of low-income families and environmental adversity. --- FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 19 Family conflict predicted higher symptoms of both types of adjustment problems. However, father presence did not moderate the effects of family conflict on either internalizing or externalizing symptoms. Thus, addressing a question of limited past research, these findings indicated that the presence of a father did not mitigate or exacerbate the effects of family conflict. One interpretation is that father presence, perhaps especially in contexts of social deprivation in the family or political violence , adds to adolescents' emotional security in the family, thereby reducing the likelihood of adolescent internalizing problems. Consistent with this interpretation, Cummings, Koss, and Davies reported that emotional security in adolescence was related to a subsequently reduced likelihood of adjustment problems. In addition, the present study differentiated the effects of conflict between families and over time within families. The significant within-family effect indicated that family conflict contributed to changes in symptoms over time for a given adolescent. That is, current levels of family conflict, relative to one's average levels of conflict, were associated with increased higher symptoms of internalizing and externalizing problems. The significant between-family effects indicated individual differences among adolescents in problem behaviors were in part attributable to differences across adolescents in their levels of family conflict. Adolescents from families with higher average levels of family conflict reported more internalizing and externalizing symptoms, as expected. The results underscored the negative impact of family conflict on adolescent adjustment, viewed in terms of both within-and between-family patterns of influence. However, although an extensive body of research has supported the impact of marital conflict , the present research studied the negative effects of family conflict on adolescent adjustment across numerous family structures . Thus, the findings may have broader implications regarding the significance of conflict in families than results for marital conflict because family conflict is more pervasive, involving a wider range of family forms. Given the high proportion of single parent families in these neighborhoods in Northern Ireland 2010). Furthermore, the effects of father presence and family conflict in adverse environments fit into a theoretical framework elucidating the impact of a politically violent social ecology on child adjustment that was posited by Cummings et al. , based on Bronfenbrenner's ecological-transactional model. In terms of this conceptual framework, father presence and family conflict are elements of an adolescent's microsystem, with environmental adversity reflecting additional influences of the social ecology on youth ontogeny . Moreover, the general ecological-transactional model, applied here to sectarian conflict in Northern Ireland, could potentially be extended to low-income communities in the US that experience ethnic or classist conflicts, providing a lens to better understand families in these communities . This research raises additional directions for research on father presence and family functioning. Notably, recent reviews call attention to the misconceptions about the lack of FATHER PRESENCE AND ADOLESCENT ADJUSTMENT 21 importance of fathers, limitations in developmental research on fathering and the significant lack of engagement of fathers in parenting programs .For example, an important direction to consider is the effect of family instability itself on adolescent internalizing and externalizing symptoms. Family stability is certainly associated with consistent father presence, but is also a distinct construct from father presence alone. Numerous past studies have indicated that family instability may contribute to child and adolescent difficulties above and beyond the impact of family structure. Although legal marriage among biological parents has been associated with the highest level of child well-being, evidence suggests that family stability may be protective even when adolescents are living within non-traditional family structures . Stable, non-disrupted single parenting has been shown to be less detrimental to adolescent well-being than exposure to multiple family transitions, further demonstrating the importance of family stability for child development . Moreover, Bachman et al. investigated the association of family structure and maternal partnership instability with adolescents' well-being among urban lowincome families and found that adolescents of established married parents displayed less delinquency and externalizing problems, according to both adolescent and mother reports, than peers in single-parent or newly married households. Similarly, Brown examined the influence of parental marital and cohabitation transitions on adolescent delinquency, depression, and school engagement, and found that adolescents who experienced a family transition reported decreased well-being, on average, relative to those in stable, two-biological-parent families. One might hypothesize that family instability and family conflict would be positively associated; thus, our results would support the hypothesis that instability has a negative impact on adolescent Developmental change also merits comment. Adolescents showed a decrease in externalizing symptoms over adolescence, indicating that adolescents showed a slight decrease in externalizing symptoms with each year across the period of adolescence and preadolescence. However, the variance component for the rate of change did not reach significance; thus, there were not significant individual differences in the rate of change for externalizing symptoms. Adolescents also showed a slight linear decline in internalizing symptoms over adolescence even when accounting for the other predictors of adolescent symptoms. Father presence did not moderate the impact of age on declining symptoms, meaning that the small decline was consistent for father-present and father-absent families. Adolescents tended to report fewer symptoms as they matured, regardless of conflict or father impacts. Limitations. First, results are based on questionnaire assessments; the addition of observational data and father-reported responses would add cogency to the tests. Second, most children were preadolescents and adolescents. Future research should also examine these relations among younger children. Third, adolescents reported on both family conflict and adolescent adjustment, which might partly account for the association between conflict and adjustment. Finally, another limitation are low internal consistencies in assessment of youth adjustment problems. However, relatively low internal consistencies are typically reported for the widely used SDQ subscales, this also reflects the aim in scale construction to maximize clinical significance . Although a limitation in terms statistical consistency, this emphasis also holds benefits over other scales for the prediction of youth adjustment problems . Conclusions. Finally, the findings support the significance of father presence and family conflict in contexts of environmental adversity. Notably, the socioecological context of relative social deprivation and historical political violence in Belfast may have increased the potential importance of father presence for child adjustment. Father presence was associated with reduced internalizing problems, consistent with the notion that father presence may support adolescence's emotional security and reduce the risk for these problems in adolescence . However, family conflict emerged as an even more pervasive predictor of adolescent adjustment problems, associated with both internalizing and externalizing symptoms in for youth in these environments . --- Tables and Figures
Burgeoning evidence identifies the influence of fathers and, relatedly, fathers in the family context (e.g., family conflict), on adolescent adjustment. However, little is known about the significance of fathers' presence in contexts of environmental risk. In a unique social-political context of economic and sociopolitical adversity, this study examined relations between adolescent adjustment, fathers' presence, and family conflict in families in Belfast, Northern Ireland. Based on responses from 999 adolescents (M = 12.18 years; SD= 1.82) and their mothers, participating from 2006 to 2012, fathers' presence was linked with reduced internalizing symptoms, and family conflict was related to both internalizing and externalizing problems. The discussion considers the implications for understanding family dynamics related to adolescent adjustment in contexts of environmental adversity.Relations among Father Presence, Family Conflict, and Adolescent Adjustment in Northern Ireland Despite increasing attention on the role of fathers in child development (Lamb et al. 1997;2004; 2010), many questions remain. In particular, the impact of fathers should not be examined independently, but fathers' influence should be considered in the context of multiple levels of the socio-ecological environment (Bronfenbrenner, 1979). Notably, there is substantial evidence that fathers influence child adjustment in contexts of interparental (Cummings, Merrilees, & George, 2010) and family conflict (Cummings, Koss, & Davies, 2015). However, relatively little is known about the father's role in adolescent adjustment, including the significance of father presence on family conflict, and the potential protective influence of fathers in contexts of environmental adversity, such as low socio-economic status (Tamis-LeMonda & McFadden, 2010) and political violence (Cummings et al., 2017). The present manuscript addresses these gaps by examining the impact of fathers on adolescent adjustment in these contexts of environmental adversity, based on six waves of longitudinal data collected on a large sample (i.e., 999) of youths in families exposed to political violence from socially deprived neighborhoods in Belfast, Northern Ireland. The impact of father presence on adolescent adjustment is a growing area of research. Over the past several decades, the family structures in which adolescents are raised have increasingly diversified (Amato, 2010). Decreasing marriage rates and increasing rates of children born to single mothers have increased the likelihood that adolescents will spend time outside of the "traditional" family structure (i.e., nuclear, two-parent) sometime during their youth in both the United States (Cherlin, 2010;Copen et al., 2012) and the United Kingdom
regular education services and accounting for funds received in federal aid and Medicaid reimbursements . Special education placement can also be costly to individual students. Placing a student into special education requires that he or she be "labeled" as requiring special assistance in order to meet the cognitive, behavioral and/or physical demands of the school's general curriculum. Such a special needs label may in turn elicit lowered expectations from the student's teachers and peers . The student's disability, in addition to both these lowered expectations and the reduced curricular coverage typical of special education programs, may result in the student learning a school's curriculum at a slower rate than those students educated in regular education settings . For many students with disabilities, the benefits of participating in a specialized educational program may far outweigh these potential educational and psychological costs. However, it remains important to investigate how characteristics of a student and his or her school relate to the student's placement into special education. To what degree do a student's characteristics predict such placement? Does special education placement vary according to the social context of the student's school? The disproportional placement of some groups of student into special education may limit the provision of special education services to other groups of eligible students. Such disproportional placement would be particularly problematic if special education services are less likely to be delivered to those most at risk or disadvantaged. --- SPECIAL EDUCATION AND ACADEMIC STRATIFICATION The early years of schooling strongly predict a student's later academic success and educational attainment . Those students initially placed in lower-ability learning groups or curriculum tracks are unlikely to later be placed in higher groups or tracks. Those placed in lower-ability groups also lag increasingly behind students placed higher groups and tracks over time . Children and youth placed into special education consistently display below-basic levels of academic achievement . Reynolds and Wolfe found that students with learning disabilities experienced a widening gap in reading ability relative to their non-disabled peers between the ages of six and twelve. Students placed into special education might therefore be expected to experience a stratified educational system's lack of opportunities. Empirical work repeatedly indicates that students placed into special education are more likely to experience long-term negative outcomes. The drop out rate for those identified as learning disabled exceeds 30 percent . About 30 and 40 percent of students with disabilities who are white and African Americans, respectively, are arrested. Over half of students with disabilities are unemployed two years after leaving school . Students who attended special education and who are able to find work after leaving school are more likely to achieve very low earnings and typically work in entry-level jobs that offer little potential for upward mobility . Current policies emphasizing high-stakes testing may increase the likelihood that students placed into special education continue experiencing such negative outcomes. Students in special education already fail promotion and graduation tests at disproportionate rates . Special education students failing exit exams in certain states are eligible for alternative diplomas . However, the post-secondary education and employment outcomes for those graduating with alternative diplomas more resemble those of high school dropouts than of graduates with traditional diplomas . --- DISPROPORTIONATE REPRESENTATION IN SPECIAL EDUCATION Certain groups of students are routinely found to be overrepresented in special education classrooms. For example, Dunn estimated that 60-80 percent of students identified as disabled were from low SES or ethnic minority households. Most of these investigations have examined the extent to which children of racial/ethnic minority heritage are disproportionately represented . Oswald, Coutinho, Best, and Singh reported that African American children were about 2.4 times more likely to be identified as mentally retarded and about 1.5 times more likely to be identified as emotionally disturbed than their non-African American peers. Disproportionate representation may be especially likely to occur for those types of disabilities that rely more on a teacher's judgment and contextual factors than those types that rely on relatively more objective criteria . To date, estimating the extent of disproportionate representation has typically relied on either "best judgment" or simple population share comparisons . For example, Chinn and Hughes reported that, whereas African Americans represented 20 percent of the U.S. population, they represented 45 percent of those students identified as mentally retarded. This over-representation has been accepted as evidence of racial discrimination . However, some scholars have noted that such comparisons to population proportions are merely descriptive. That is, they fail to account for the fact that some groups of children are more likely to be exposed to the health, environmental, nutritional, social, and economic factors that themselves contribute to the occurrence of disabilities . Investigations of disproportionate representation increasingly attempt to account for confounding factors when estimating whether a child's race or ethnicity predicts his or her special education placement . Skiba and colleagues' analyses used the most extensive set of covariates to-date. Here the investigators statistically controlled for differences in poverty, the school district's resources, and measures of academic performance and behavior. Like both Oswald et al. and Hosp and Reschly, Skiba and colleagues found that race and ethnicity continued to be statistically significant predictors of special education placement, although the effect varied by disability category. For example, African Americans were 2.6 times as likely to be identified as mentally retarded, and 1.3 times as likely to be identified as emotionally disturbed as non-African American children, but only .98 times as likely to be identified as learning disabled. However, relatively few investigations have analyzed nationally representative datasets. Instead, and despite special education constituting federal-level educational policy , most prior investigations have analyzed aggregated districtor state-level data. In addition, the investigations to-date have used district-level data to statistically control for confounding factors. For example, Skiba and colleagues estimated the effects of poverty by using the percentage of students attending the particular school who were eligible for free and reduced lunch. Both Hosp and Rechley and Skiba and colleagues controlled for differences in academic achievement . Thus, no nationally representative study to date has statistically controlled for an extensive number of individual-, family-, and school-level covariates in attempting to determine whether a child's race/ethnicity elevates his or her likelihood of being placed in special education. Including individual-, family-, and school-level covariates helps provide a more rigorous investigation of potential bias in special education placement. For example, one hypothesized explanation of African Americans' increased likelihood of being identified as emotionally disturbed is that their mostly white teachers use a culturally biased set of reference behaviors to judge their actions as problematic . Yet the interaction between teacher and student race cannot be investigated using only districtlevel data. Including a wide range of covariates also allows for a rigorous investigation of the extent to which the student's individual level of academic achievement or behaviorrather than his or her race/ethnicity-could be characterized as a "driving force" of the student's placement into special education. --- SUBJECTIVITY IN SPECIAL EDUCATION ELIGIBILITY Over 12 percent of American K-12 students were diagnosed with disabilities in 1998 . A majority of these were diagnosed with either learning disability or emotional disturbance . These and other "judgmental" disabilities differ from more "medically-defined" disabilities in their greater use of social norms . Physicians rarely diagnose judgmental disabilities. Rather, and at some point during the student's K-12 career, the eligibility process for judgmental disabilities is initiated when a teacher begins to consider the student as performing significantly below grade-level learning or behavioral standards, and so refers the student for evaluation as possibly having a disability. This referral results in a process of teacher and administrator consultation, psychological evaluation, examination of the student's record, committee meetings, and meetings with the child's parents. Estimates of the proportion of referrals that result in special education placement range from 50 to 85 percent . However, teacher judgments of acceptable student achievement or behavior are necessarily based on the performance of the teacher's particular referent group, which is other students in the school. Thus, the student's school helps provides a normative standard for identifying whether he or she is disabled and so is eligible for special education. Consider the counterfactual of a low-performing student simultaneously attending two very different schools. One school's student population averages a high level of academic achievement. The other averages a low level of achievement. The student should be more likely to be placed into special education when attending the high-performing school. This is because the teacher's judgment of student performance will be relative to that of other students in the school. A "frog-pond effect" may therefore exist, in which the same student appears worse when compared to higher-than to lowerperforming schoolmates. Additionally, the special education resources of a low-performing school may be more severely strained by a larger number of referrals. The school's limited resources may result in referral only being initiated for those students displaying extremely low academic achievement or much more frequent problem behavior, again relative to those students attending the low-performing school. Figure 1 illustrates this phenomenon. The figure displays normalized test score distributions based on the means and standard deviations of two schools -numbers 850 and 1271 -from the ECLS-K database that we analyzed. The students attending school 850 have a mean test score approximately 0.67 standard deviations above the sample grand mean. In contrast, school 1271's mean is 0.67 standard deviations below the grand mean. The point plotted on each curve represents the average kindergarten standardized test score of all students in the database who were placed into special education by spring, 2004 . If school context did not predict special education placement, then a hypothetical student with this initial test score, ceteris paribus, should have the same likelihood of special education placement whether attending either school. But a score of -0.66 is much further below the average in school 850 than in school 1271 . Consequently, a student with this score who attends school 850 is more likely to "stand out." In addition, if the sample-wide grand mean test score of special education students were used as a criterion for special education placement in all schools, teachers in school 1271 would be referring half of the school's students. This is of course not a feasible solution, nor is it financially possible. Thus, lowerachieving schools may be less able than higher-achieving schools to meet the needs of all their underperforming students by placing their students into special education. Any particular student's likelihood of being placed into special education should decreases as his or her school's resources are allocated to a proportionally larger number of underperforming students. We would expect this "frog pond" phenomenon to occur for behavior problems as well as for academic achievement . Thus, a student with a given level of behavior problems is less likely to be referred for special education placement in a school where academic disengagement and problem behavior occur more frequently. There may be additional mechanisms that contribute to subjective and contextuallyinfluenced placement. The student's social class or race/ethnicity, the teacher's social class or race/ethnicity, and the social class or racial/ethnic composition of students in the school may interact in complex ways to result in higher placement rates for particular groups of students. For example, Downey and Pribesh reported that kindergarten teachers who were white judged students who were black to have significantly more externalizing behavior problems than did teachers who were white. Limitations in the study's data resulted in the investigators being unable to identify which of three rival explanations were responsible for this effect- white teachers' negative prejudice toward the behavior of black students, black teachers' positive prejudice toward the behavior of black students, or black students behaving more positively with black teachers. It is unknown whether effects of this sort depend on the social class or minority composition of the teachers or students in the school. It is also unknown whether this type of effect lead to differential special education placement rates across demographic sub-groups or schools. Class and race effects on special education placement are further complicated by the greater exposure of lower income, African American, and Hispanic children to those factors that themselves contribute to disability identification. Such factors include biological trauma , and increased exposure to environmental toxins. They also include "social trauma" such as being raised in poverty, or by a single-or teenage-parent. Additional risk factors include parents who are high school dropouts or second-language learners, depressed, disorganized, unemployed, or incarcerated, and who reside in high-risk neighborhoods. These factors may result in the lower cognitive and behavioral performance displayed by low-income minority students when they begin kindergarten . The lower academic performance of low-SES and ethnic minority children elevates their likelihood of special education placement. However, the long-term effects of segregation can place these students in schools where frog-pond contextual effects reduce their special education placement rates. In addition, class-and race-stereotyping, and social dynamics involving both the class and race of teachers and students may have effects. The resulting complex inter-play in factors is highlighted by Coutinho et al.'s finding that minority children's special education placement rates declined as the percent of minority children attending the school district increased. --- STUDY'S PURPOSE We sought to empirically estimate how a range of individual student-, family-, and schoollevel factors increase a student's likelihood of being placed into special education. We do so by analyzing data from the Early Childhood Longitudinal Study, Kindergarten Class of 1998-99 . Whereas prior studies have been largely aggregate and cross-sectional , the ECLS-K provides longitudinal data on individual student achievement and behavior. We were therefore able to estimate to what extent these children's academic skill proficiency and frequency of learning-related behaviors at school entry predicted whether they had been placed into special education by the end of fifth grade. By using multilevel modeling and statistical control for schools' average achievement and learning-related behavior levels as well as their socioeconomic and racial/ethnic makeup, we are also able to estimate how a school's context related to the child's likelihood of later special education placement. --- DATA AND METHODS The ECLS-K is a nationally representative longitudinal survey of children, their parents, teachers, and school administrators. The data is maintained by the U.S. Department of Education, National Center for Education Statistics. Children participating in the ECLS-K began their kindergarten year in 1998. Data on these children have been collected in spring 1999, fall 1999 , spring 2000, spring 2002, spring 2004 and spring 2007. Of those who began the study, 11,138 students in 970 schools had complete data on whether they had been placed into special education by the spring of 2004.We use the child panel weight included in the ECLS-K restricted dataset in our analyses. Doing so helped adjust for unequal selection probabilities and more accurately represent the national population of kindergarteners in the fall of 1998. There is substantial missing data in the ECLS-K when analyzed from kindergarten through fifth grade. We did not consider these data as meeting the assumption of missing completely at random . Thus, the removal of cases with missing data from the analytic sample would likely introduce bias to our analyses while causing improper estimation of correlations and standard errors . However, the ECLS-K contains much information on children, their families, and their schools, including variables that help account for the mechanisms resulting in missing data . Controlling these variables leads to a reasonable assumption of missing at random , and allowed us to use multiple imputation procedures to retain the largest possible number of cases in our analytic sample . Multiple imputation involves the use of multiple complete data sets containing imputed values for missing data, each of which can be analyzed using standard complete-data methods. The estimates garnered from the separate data sets are then combined into one coherent set of findings ). Multiple imputation is considered superior to single imputation because it incorporates uncertainty into the standard errors of imputed values by accounting for variance between imputed solutions . Because single imputation approaches assume perfect estimation of imputed values and ignore between-imputation variability, single imputation may result in artificially small standard errors and increased likelihood of type-one errors, particularly when the proportion of missing items is high. We used the IVEware computer program to impute missing values five times, creating five separate complete data sets. The analyses were then conducted separately on each of these data sets. The five resulting sets of parameter estimates were then combined using formulas developed by Rubin to produce the results reported here. --- Data Analysis Procedures We used individual and school-level variables measured in the fall of kindergarten in 1998 to predict a student's likelihood of being placed into special education by the spring of 20041 . Using predictors measured in the fall of kindergarten, 1998, helps avoid endogeneity problems, in that a student's academic performance or behavior as measured during the 1998 -2004 period might be the result of the student's special education placement. We also include a predictor for whether or not students changed schools during this time period. We are unable to include variables characterizing the average performance or behavior in the schools that students moved to. This is because other students in these schools were not generally part of the ECLS-K sample. However, any bias introduced by using school-level measures from fall of kindergarten should result in more conservative estimates. This is because measurement error in these independent school-level variables for students who moved should bias the estimated effects of these variables toward zero. Logistic regression is appropriate for modeling a student's likelihood of special education placement and estimating the magnitudes of effect for various predictors. However, basic logistic regression models are unable to adequately account for data that result from clustersampling within schools. The ECLS-K includes such data. Thus, we used multilevel modeling. Doing so should have resulted in more accurate estimation of student-level effects within separate schools , as well as accurate estimation of the unique influences of the school environment . Our analyses used a two-level Bernoulli sampling model to appropriately adjust standard errors to reflect data clustering and account for the effects of individual-, family-, and school-level characteristics on a student's likelihood of special education placement . This type of multilevel model produces coefficients that can be interpreted in the same way as traditional logistic regression coefficients. --- Variables In these analyses, we used as a dependent variable the dichotomous receipt or non-receipt of special education services during the student's 2003 -2004 school year. As shown in Table 1, 8.8 percent of students received special education services for any disability during the 2003 -2004 school year. About 3 percent of students were placed with a diagnosis of speech/language impairment , 5.7 percent with a diagnosis of learning disability , 0.7 percent with mental retardation , and 0.6 percent with an emotional/behavioral problem . The remaining students were diagnosed with less frequently occurring disabilities. These included developmental delay, brain injury, health impairment, hearing impairment, hard of hearing, visual impairment, deaf/blind, and physical impairment2 . Student gender is indicated by a dichotomous variable labeled "male", with a score of "1" attributed to males and "0" to females. The sample is 50.4 percent male. Five racial/ethnic groups are included: non-Hispanic white, black/African American3 , Hispanic, Asian, and a group labeled "other ethnicity" composed of the remaining students, including Native Hawaiians and other Pacific Islanders, American Indians, Alaskan Natives, and multiracial non-Hispanics. Non-Hispanic white students comprise the majority of the sample , followed by Hispanics , black students , Asians , and students of other racial/ethnic backgrounds . We estimated the effects of a family's SES using the continuous SES measure employed by NCES. This measure surveyed the parents' income, educational attainment, and occupational status at the time of their child's entry into kindergarten. We standardized SES for the fall of children's kindergarten year, using the mean of all other students in the ECLS-K sample. Thus, the SES variable has a mean of about zero and a standard deviation of about one4 . We estimated a student's academic achievement using an Academic Test Score variable. The ATS is the average of a student's Reading and Mathematics Test item response theory score at kindergarten entry in the fall of 1998, standardized across all individuals in the ECLS-K. The Reading Test and the Mathematics Test were administered individually, using an untimed format. The Reading Test measures children's basic skills , vocabulary , and comprehension . The Mathematics Test measures a range of age-and grade-appropriate mathematics skills . Each demonstrates strong psychometric properties . For example, the fall of kindergarten Reading and Mathematics Tests displayed theta reliability coefficients of .91 and .92, respectively . We used two measures of a student's behavior. The first measure, termed Approaches to Learning, is a scale of a teacher rating on six questions evaluating a student on his or her task engagement. Example behaviors include attentiveness, task persistence, eagerness to learn, learning independence, and organization. Higher ratings indicate that the student is more frequently engaged in classrooms tasks. The second measure, termed Externalizing Problem Behaviors, also is a scale on which teachers rated the frequency that a student displayed externalizing behavior problems. Example behaviors include arguing, fighting, acting impulsively, getting angry, and disrupting class activities. Higher ratings indicate that students are more frequently displaying such problem behaviors. Both measures of behavior again display strong psychometric properties . The approaches to learning and externalizing problem behaviors measures were also converted into Z-score form. Because these variables were measured at the time children entered school, they can be interpreted as representing particular dimensions of students' academic and behavioral school readiness . The approaches to learning and externalizing behavior scales measure the degree to which a child is adhering to the norms for learning-related and non-aggressive or -disruptive behaviors the time of kindergarten entry. Academic test scores should indicate a student's level of cognitive functioning and initial familiarity with academic topics at kindergarten entry. However, academic test scores measure administered at school entry should mostly index what a student has learned prior to entering school. These may not index to what extent a student will respond to an elementary school teacher's delivery of formal instruction. Downey and Pribesh found that teacher race was significantly associated with blackwhite student differences in teacher judgments of externalizing behavior. . To test for the possibility of such effects in our data, we constructed a measure of the proportion of each student's teachers that were non-Hispanic white during the 1998-99, 1999-2000, 2001-02, and 2003-04 school years. . We add this mean white teacher variable to statistical models as both a main effect and interaction with student race to test and control for any effects of teacher-student racial matching on the likelihood of special education placement. We also use as a statistical control a dichotomous indicator of whether a student moved away from his or her original school before spring of the 2003-2004 school year. Sixteen percent of students had changed schools by this time period. The school-level measurement error introduced by such student mobility biases our school-level effects downward, such that our estimates of these effects are conservative. We computed school averages for academic test scores, approaches to learning, externalizing problem behaviors, and SES by aggregating student scores in fall kindergarten, 1998, by school ID. The school percent minority enrollment was obtained from a questionnaire administered to school principals. This variable ranged from 0 to 100 percent. Table 2 shows rates of special education placement and diagnosis in spring 2004, separately by race/ethnicity. The highest overall placement rate is for the other ethnicity category, with a rate of 10.7 percent. The next highest is for African Americans, with a rate of 10.6 percent. This is followed in order by non-Hispanic whites , Hispanics , and Asians . Examining the diagnoses separately for whites, blacks, Hispanics, and other ethnicity students, the learning disability and speech/language diagnoses are most common. Placement rates for LD fall near 6 percent for all groups except Asians. Placement rates for SLI near 3 percent. Mental retardation and emotional/behavioral disabilities are diagnosed much less frequently. The infrequency of these diagnoses makes a reliable application of inferential statistical methods problematic. Multilevel logit regression models predicting these outcomes often failed to converge. Thus, we mostly restrict our reporting to regression analyses predicting special education placement, as measured using those four outcomes that converged in the regression models. These were: placement with any disability, placement as learning disabled, placement as having a speech/language impairment 5 , and placement as mentally retarded. The estimate for placement overall should be relatively accurate. This is because mental retardation and emotional/behavioral disorder, as well as the other diagnoses, so rarely occur for each of the race/ethnicity groups that their placement patterns that they should have little effect on our estimates for the overall special education placement patterns. However, and because prior research has identified mental retardation as a category of specific concern with regard to minority overrepresentation , we do report on models predicting special education receipt with a mental retardation diagnosis. Results of these models should be interpreted very cautiously. The low special education placement rates for emotional/behavioral disorder precluded multilevel regression analysis of this outcome. We therefore could not reliably estimate predictors of placement for EBD. Despite the fact that these disability categories are relatively infrequently diagnosed and, as such, cannot be fully investigated here, they are important to further study. For example, extant research has identified EBD as an arena in which minority overrepresentation is especially likely . Table 2 shows that African Americans have higher special education placement rates than non-Hispanic whites. Hispanic and white students tend to have comparable placement rates . Asian students have substantially lower placement rates than any other racial/ethnic group. Table 3 displays the means of individual-, family-, and school-level variables that are likely to predict special education placement, separately by racial/ethnic group. At the individuallevel, blacks, Hispanics, and other ethnicities might initially be expected to display higher special education placement rates. Specifically, their test scores, approaches to learning, and 5 SLI is not generally a disability category of concern to researchers of minority overrepresentation in special education . Also, SLI differs from the other disability categories insofar as certain manifestations of the disability do not necessarily relate directly to academic achievement. In additional analyses we examined placement patterns for all disabilities except SLI, but found no differences between the results of those models and models predicting placement for any disability, including SLI. family SES tend to be lower, and their externalizing behaviors higher than those of non-Hispanic whites. However, Table 3 also indicates that blacks and Hispanics typically attend schools that average lower test scores and approaches to learning scores, and higher externalizing behavior scores. If there is a frog-pond effect, such that students in lower-performing schools are less likely to be placed into special education, then this greater concentration of black and Hispanic students in lower-performing schools may reduce their placement rates. This may partly explain the lower rates of placement for racial/ethnic groups after statistically controlling for individual-level variables. We investigate this further in the regression results reported in Tables 45678. --- MULTI-LEVEL LOGISTIC REGRESSION RESULTS Table 4 presents the results of multilevel logistic regression models predicting special education placement, regardless of the disability identified, in the spring of 2004. Although models 1 through 4 include only predictors measured at the individual-level, each of the models was specified as multilevel. Doing so should have resulted in standard errors that corrected for the ECLS-K's clustered sampling design. Model 1 uses only gender and race/ethnicity as predictors. Males are significantly more likely than females to be placed into special education. Both blacks and Asians are more likely than whites to be so placed. The placement rates of Hispanics and children of other ethnicities are not significantly different from non-Hispanic whites. Model 2 adds a family's SES. Being raised in a family with a higher SES significantly decreases a student's odds of special education placement, statistically controlling for variation attributable to the student's race/ethnicity. Controlling for a family's SES results in Hispanics being significantly less likely than whites to be placed into special education and the positive African American coefficient becoming statistically non-significant. The male and Asian effects are essentially unchanged. Model 3 add the student's mean academic test score at kindergarten entry. Being relatively more proficient academically at school entry strongly reduces a student's likelihood of being placed in special education by fifth grade. Further, higher levels of academic achievement fully mediates the predicted effect of the family's SES. We therefore find no evidence that a family's social class biases a school's decision to place a student into special education, after accounting for the relation between the parents' SES and their student's academic readiness for school. Statistically controlling for the student's initial level of academic achievement results in the black, Hispanic, and Asian students being significantly and strongly under-placed into special education. This result contradicts prior research that failed to control individual-level student achievement test scores. Controlling for a student's academic achievement at school entry, students who are , black, Hispanic, Asian, and of other race or ethnicity are much less likely than non-Hispanic white students to be placed into special education programs. Even after statistically controlling for variation attributable to their levels of academic achievement, male students are significantly more likely than females to be placed into special education. Model 4 adds the frequency of the student's task engagement and externalizing behavior problems, as well as the predictor of school change. A student who is frequently engaged in classroom tasks is less likely to be placed into special education. A student who frequently engaged in externalizing behavior problems is more likely to be so placed. However, this effect is much smaller in magnitude and only marginally significant . Changing schools does not have a statistically significant effect on the odds of special education placement. Adding these behavior variables to the model slightly reduces the effect of the student's test scores. However, the effect remains large and statistically significant. The estimate for gender decreases, but it also remains large and statistically significant. That is, statistically controlling for the student's academic proficiency and behavior does not mediate the effect attributable to the student's gender. This is despite descriptive statistics of the ECLS-K sample indicating that teachers rated as less engaged in classroom tasks and more disruptive than girls and boys scored somewhat lower on measures of their academic achievement6 . The estimates for black, Hispanic, Asian, and other race or ethnicity remain large, negative, and statistically significant after statistically controlling for classroom behavior. Modes 5 through 8 add the school-level variables . We first add school percentage minority enrollment. This variable has a statistically significant negative relation with special education placement. The inclusion of this school-level variable explains some of the individual-level race/ethnicity effects. The coefficients for black, Hispanic, Asian and other ethnicity are all reduced in magnitude. The estimates for black and other race or ethnicity are no longer statistically significant. This mediation indicates that much of the negative effect of minority status on special education placement is attributable to students of minority race/ethnicity attending school attended by many other minority students. Model 6 adds school-level SES. The school's SES increases a student's likelihood of special education placement. The variable also explains a small portion of the school minority enrollment effect. Model 7 adds the school's mean test score. The effect of this variable is positive and large. It is thus consistent with the hypothesized "frog-pond" effect. As with individual-level SES and test score measures, school-level test scores explain the schoollevel SES effects. However, the lower special education placement rates in high minority schools are not explained by these schools' lower levels of academic performance. Instead, minority schools under-place students into special education occurs over and above that predicted by an academic "frog-pond" effect. Model 8 adds all five school-level variables. Two of these are statistically significantschool percent minority, and school mean approaches to learning. The latter variable, like school average test scores, produces a "frog-pond" effect. Students attending schools with higher average levels of student engagement are at greater risk of special education placement. However, the school-level approaches to learning and school-level test scores variables correlate , and so may 'share' their effects via collinearity. The full model indicates that family SES does not have a statistically significant relation with special education placement, nor do school means for externalizing behaviors, SES, and test scores. However, individual-level externalizing behavior has a statistically significant and positive relation with placement. The magnitude of the other effects are essentially unchanged. Individual-level test scores and school engagement are strongly related to placement. We can contrast the magnitudes of the aforementioned coefficients because they are measured as Z-scores. Doing so indicates that the single largest effect is for individual-level test scores. Further, and after statistically controlling for a wide range of variables, boys are over-placed into special education relative to girls. Hispanic and Asian students are underplaced relative to non-Hispanic whites. The placement rates for black and other ethnicity students are not significantly different from non-Hispanic white students' placement rates. To test for effects of student-teacher racial matching, we re-estimated Model 8. We included students' mean teacher race and its interaction with student race/ethnicity as predictors . These effects were not statistically significant. The effects of the other variables are not changed substantially. These results do not provide support for the hypothesis that special education placement is biased by a teacher's race/ethnicity or its interaction with student race/ethnicity. This pattern holds for all outcomes examined below. We next examined whether these data patterns for special education placement overall hold for the specific disability diagnoses. Thus, we estimated the regression models separately for the diagnoses of learning disability, speech/language impairment, and mental retardation, Tables 5 through 7 displays these estimates. Table 5 displays the estimated models predicting placement into special education as a result of a learning disabilities diagnosis. The results are genrally consistent with those of the aggregated special education placement for all disabilities . However, there are some notable differences in magnitudes of effect. At the individual-level, the effect for a student's academic achievement for special education placement for LD is even stronger than the effect for special education placement in general. The effect of approaches to learning is about the same size for placement with LD as for placement in general. Externalizing behavior problems have no significant effect on LD placement. Males have even stronger over-placement into special education with LD than they do for special education placement overall. The effect for Asian race/ethnicity of under-placement in special education with LD is stronger, as is the effect for Hispanic race/ethnicity, than those for overall placement in Table 4. The complete model indicates that LD placement rates for black and other ethnicity students are not statistically different from those of white students. This is consistent with our analyses of special education placement overall. At the school-level, the racial/ethnic composition of the student body is a slightly stronger predictor of under-placement for special education for LD than for placement overall. However, the "frog-pond" contextual effect of school-average learning-related behavior weaker for placement because of LD than for placement overall. None of the other schoollevel average variables -SES, academic test score, or externalizing behaviors -have statistically significant effects on special education placement for LD. Table 6 displays results of models predicting special education placement for speech/ language impairment. The pattern of results is again consistent with those for placement overall, albeit with some differences in magnitude and statistical significance. We again find that after statistically controlling for a student's academic achievement that social class effects are fully explained. Each of the racial/ethnic groups have significantly lower special education placement rates than whites. Males continue to be placed more frequently than females. For the school-level variables, a student's odds of placement because of SLI are affected by the racial composition of the school to a slightly greater extent than his or her odds of placement overall. However, individuals' odds of placement with SLI are not significantly influenced by the other measures of school context. Table 7 displays results of models estimating the odds of special education placement with the diagnosis of mental retardation. These models produce few statistically significant effects, which is likely due to the very low prevalence of this diagnoses . Nevertheless, the patterns of the estimated coefficients approximate those observed for the other outcomes. Academic test scores and approaches to learning are strongly and negatively associated with students' odds of placement with MR. After statistically controlling for these variables, students of minority race/ethnicity are under-placed compared to whites. Boys are over-place compared to girls. Of the school-level variables, only school minority enrollment has a significant effect on placement for mental retardation. Collectively, these analyses indicate that the patterns of special education placement with LD, SLI, and MR are very consistent with the patterns for special education placement for disability in general. --- DISCUSSION We used nationally representative data to identify the individual-, family-, and school-level variables that predicted a student's likelihood of placement into special education. We estimated the effects for these variables both for the general class of disabilities and for the specific diagnoses of learning disability, speech/ language impairment, and mental retardation. Our analyses of special education placement overall indicated that the strongest explanatory factor is the student's academic achievement at school entry. This factor explains much of the social class differences in placement rates. Our analyses of the specific disability categories indicated that the student's level of academic achievement fully mediated the SES effect on placement with SLI and partially mediating the effect for overall placement and placement with LD and MR. Second in importance is the frequency in which the kindergarten student engaged in classroom tasks. After statistically controlling for academic achievement and behavior, our analyses indicated that boys are significantly more likely than girls to be placed in special education in general, and for both LD and SLI separately. We also found that students of minority race/ethnicity are less likely than whites to be placed into special education in general. This was also the case for each of the specific diagnoses that we analyzed. At the school level, our analyses yielded evidence of "frog-pond" contextual effects. Specifically, higher school-level means in academic achievement and engagement increased a student's odds of being placed into special education. This was the case even after statistically controlling the student's own background characteristics. We also found that schools where a high percentage of minority students were enrolled were less likely to place students into special education in general. This was also the case for the specific disabilities of LD, SLI, and MR. This contextual effect partially mediated the under-placement of Hispanic and Asian students into special education. It also fully explained African American under-placement. For reasons that are not attributable to the average performance, conduct, or SES of their students, high-minority schools do not utilize special education as a system of specialized service delivery as often as schools with lower minority enrollments. A number of our findings are consistent with prior research. For example, our finding of a gender effect on placement is consistent with recent research indicating that boys are more at-risk of disability identification than girls. Colligan, Barbaresi, Schaid, and Jacobsen found that boys were two to three times more likely to be reading disabled than girls. This was the case regardless of whether a regression-, discrepancy, or low-achievement identification method was used to identify the children as disabled. However, our finding that the effects for race/ethnicity -that is, that students who are black, Hispanic, and Asian are under-or equally placed in special education compared to whites, after extensive statistical control for other variables-contrasts strongly with almost all other research in this area . Why might minority students be under-or equally placed into special education? As evidenced by the descriptive statistics reported in the bottom panel of Table 3, racial/ethnic minority students are more frequently attend schools having, on average, greater percentages of minority students, lower levels of academic achievement and classroom task engagement, and lower average family SES than schools typically attended by non-Hispanic white students. Sociological research consistently shows that schools' social contexts strongly predict the organization of their institutional structures, particularly the internal differentiation of the student body into instructional sub-units . Lower-resource schools encountering daily challenges associated with low-performing student bodies might employ different organizational strategies than higher-resource, higher-achieving schools. Special education placement may be initiated more frequently in more advantaged schools that are attended by relatively few low-performing students and who are able to allocate more financial and human resources to intervention than in those schools encountering the dual challenge of scarce resources and higher proportions of underperforming students., Thus, black or Hispanic students may be less likely to be placed into special education than non-Hispanic white students because of their enrollment in less advantaged schools. A second explanation of minority under-placement could be that teachers are more attentive to the issue of minority overrepresentation in special education. Minority overrepresentation has been repeatedly investigated and debated since the late 1960s. Research has consistently reported on possible racial inequality in special education placements . Teachers may have reduced their special education referral rates for minorities as they became more sensitive to the possibility of such racial inequality. We measured special education placement during spring, 2004. Because the ECLS-K captures a relatively recent time period, we may have observed a period of correction during which teachers are working to reduce their special education referrals for minority students. One finding complicates interpretation of our results. Specifically, our results indicated that Asian students are under-placed and that controlling for the school's percentage of minority students partially explains this under-placement. As a group, Asian students are relatively high-performing. As indicated by Table 3, their level of academic achievement approximates those of non-Hispanic whites, while their approaches to learning and externalizing behavior problems scores are better than those of whites. To our knowledge, there has not been any substantial public discussion of Asian over-placement into special education that could have led educators to intentionally reduce Asian children's special education referral rates. The typical Asian student attends a school with reasonably high levels of academic achievement and a high percentage of minority students . Presumably, many of these schools have high concentrations of Asian students. Asian parents often highly regard school achievement . If Asian parents view special education placement as possibly impeding their children's academic leanring, then they may be less willing to allow their children to be so placed. It may also be that teachers in schools with high concentrations of such parents and students may be attempting interventions other than special education placement. --- LIMITATIONS We believe that our findings are robust, as they are derived using a large, longitudinal, and nationally representative sample, individually-administered achievement measures, multiple measures of behaviors, a wide range of additional individual-, family-, and school-level covariates, as well as advanced statistical modeling techniques. Nevertheless, we believe that our study has at least three limitations. First, we analyzed data on placement patterns using a sample of elementary school students. It is possible that analyses of students attending middle or high school would have yielded other types of placement patterns. Second, sample size limitations limited our ability to analyze the placement patterns of some disability categories, including those for which minority overrepresentation has been previously reported to be particularly strong ). We did conduct analyses for special education diagnoses separately by race/ethnicity. We found that speech/language impairment and learning disability accounted for the great majority of all placements. This was also the case separately for each of the race/ethnic groups. Placement with a diagnosis of mental retardation or emotional/behavioral disorder was too infrequent an occurrence, for all groups, to account for race/ethnic differentials in overall special education placement. Further, we conducted separate regression analyses predicting the two most common diagnoses -SLI and LD. These analyses yielded patterns similar to those for special education placement as a whole . We also estimated models predicting special education placement with MR. However, these results should be treated cautiously and are not necessarily generalizable to the population of children with MR. The number of race-specific sample members placed in each of the MR and EBD categories was too small to permit reliable regressions predicting these outcomes. Although the pattern of results for MR was generally similar to those for the other diagnoses, future studies targeting a large and nationally representative sample of children diagnosed with MR and EBD would be better suited to disaggregating individual and contextual effects on the likelihood of placement with these relatively uncommon disabilities. A third limitation of our study is that, although we hypothesized that school financial and human resources help determine students' likelihood of special education placement, the ECLS-K does not include information about schools' funding and other resource allocations. The inclusion of explicit measures of school-level per-pupil expenditures into future statistical models predicting special education placement rates with individual-level data would greatly contribute to the field's understanding about the effects of such factors on special education placement. --- FUTURE DIRECTIONS FOR RESEARCH Our finding that ethnic/racial minority students are under-placed into special education runs contrary to most of the extant work, and so should be replicated. raises many questions. Additionally, future studies should investigate the types of services that are provided to students of minority race/ethnicity who would have seemed likely to be placed into special education. Are these students more typically retained in grade? Do schools provide such students with extra educational resources through programs other than special education Our study indicates "context matters." Future studies should investigate the organizational structure of low-SES and low-achievement schools, and how these organizational structures contribute to the service delivery. For instance, do high-achieving schools "help" or "hurt" under-performing children by placing them into special education at greater rates? Do these schools provide, as a result of their greater resources, higher-quality special education services? What do under-performing students in low-achievement schools experience when placed into special education? Our own investigation of special education provides little evidence that it positively impacts children's learning or behavior. Future work should also investigate the interaction between a minority student's placement into special education and the type of setting in which he or she receives these services. Students placed into special education are expected to be receive services in the "least restrictive environment," or the classroom setting that as closely as possible approximates the general classroom setting. Yet some work has also begun to indicate that the restrictiveness of a student's placement varies by his or her race/ethnicity. Skiba et al. reported that black students were more likely to be educationally segregated, in that they less often received instruction in general education classroom and more often received instruction in restricted settings. This pattern held regardless of whether the student had been identified as LD, ED, SLI, and MR. Additional work on minority disproportionate representation in special education is clearly warranted. Mean Test Score for all Special Education Students in Relation to Normalized Test Score Distributions of a High-and a Low-Performing ECLS-K School ---
We use nationally representative data from the Early Childhood Longitudinal Study, Kindergarten Class of 1998-99 (ECLS-K) to identify variables measured in the fall of 1998 (when the sample's students were in kindergarten) that predict special education placement by the spring of 2004 (when those not retained were finishing fifth grade). Placement's strongest kindergarten predictor is a student's own level of academic achievement. Also important is the student's frequency of classroom task engagement. There is a "frog-pond" contextual effect --attending an elementary school with high levels of overall student academic ability and behavior increases a student's likelihood of special education placement. This is the case even after statistically controlling for a wide range of individual-, family-, and school-level characteristics. Social class background displayed a weak or statistically non-significant relation with special education placement. However, girls are placed less frequently than boys. African American, Hispanic, and Asian students are placed less frequently than non-Hispanic whites. The under-or equal-placement rates for racial/ethnic minorities are partially explained by their concentration in high-minority schools. Funding under the Individuals with Disabilities Education Act (IDEA) provides special education and related services to nearly 6 million K-12 schoolchildren per year (US Department of Education 2005). These services are individually designed to meet the cognitive, emotional, behavioral, and/or physical needs of a student with a disability. Special education should provide the student with the resources, adapted instruction, and specialized assistance to mitigate the effects of his or her disability, and so allow the student to successfully benefit from the school's general curriculum (e.g., Bateman & Lindem, 2006). Despite its intended benefit, special education placement also entail substantial costs. The federal government spends 90% more (or about an additional $4,000 per year) to provide a student with special rather than a regular education (U.S. Department of Education 2002). States and localities also allocate substantial funds to provide special education services. For instance, and for 2008, the state of Kansas estimates that it will spend $404 million to provide students with special education services, after subtracting out the costs of providing
INTRODUCTION Understanding the effects of tourism on host populations has long been a question of primary importance for both academics and policymakers. Tourism affects various aspects -economic, social, cultural, environmental -of life in host societies , and the substantial literature studying these effects is far from unanimous as to whether tourists change hosts' lives for better or for worse. One the one hand, residents benefit from tourism via enhanced economic activity, upgrade of recreational facilities, organization of festivals, opening of restaurants, revitalization of local cultures and investments in environmental infrastructure; on the other hand, tourism may increase the cost of living, contribute to noise pollution, crowding, traffic, begging and crime problems, disrupt traditional cultures and ways of life, and lead to environmental degradation and Kim, Uysal, and Sirgy for extensive reviews of tourism impacts at the community level). The recent decision of the mayor of Barcelona to limit tourist numbers provides a vivid example of a negative net effect of mass tourism on the well-being of local residents. Similar voices of local dissatisfaction are being heard across many popular tourist destinations in Europe . In an attempt to gauge the effects of tourism on the well-being of host populations from a more holistic perspective, recent literature has started addressing the impacts of tourism on residents' quality of life and its various manifestations, such as subjective well-being . Most of these contributions have focused on individual perceptions of tourism impacts in specific tourist-receiving communities, and have generally found a positive association between the perceived value of tourism and wellbeing: people who think that tourism is beneficial tend to report higher levels of subjective well-being. Against this background, a question that has received less attention is how actual tourist inflows affect the subjective wellbeing of the host populations. This paper aims to address this gap. Focusing on international tourist inflows, it asks the following questions: Does an increase in the number of tourists affect subjective well-being of people in tourist-receiving counties and, if so, how ? Are the well-being effects of tourism more pronounced in countries with relatively high tourist inflows? Is the subjective well-being of particular sociodemographic groups, such the elderly, the low-skilled and rural residents, more likely to be affected by tourism? Does tourism affect the two main components of subjective well-beinglife satisfaction and happiness -differently? Finding answers to these questions is important from a policy perspective. First, in many countries across the world, governments and policymakers have recognized the potential of tourism for national and regional development and actively promoting tourism-enhancing policies . As the numbers of tourists grow, policymakers may be interested in how tourism affects not only the economic outcomes but also the overall quality of life and subjective well-being of host populations. It is also of policy interest whether these well-being effects differ between countries with more and less intense tourist inflows, and whether tourism has a differential impact on the well-being of different socio-demographic groups. Answers to these questions would lead to a broader and deeper understanding of the well-being effects of tourism, which in turn could help inform and design more successful tourism development policies. Second, subjective well-being -a variable of primary interest in this study -is becoming an important policy measure in its own right. Governments across the world have been adopting different measures of subjective well-being to capture individual welfare and societal progress, and guide policymaking . Recent evidence suggests that subjective well-being has a number of objective benefits: more life-satisfied and happier people live longer, are healthier, more productive, more creative and more sociable . Thus, tourism planners should be interested in designing and adopting tourism policies which enhance, or at least do not reduce, people's subjective well-being. This paper uses data from the European Social Survey to explain how the subjective well-being of over 260,000 respondents from 32 European countries has varied in response to the countrylevel tourist arrival rate over 12 years . There are several ways in which it advances the scholarly dialogue. First, it contributes to the empirical literature on tourism and subjective wellbeing. A large strand within this literature has studied the effects of tourism experience on the subjective well-being of tourists themselves . However, much less is known about how tourism affects the well-being of people in host societies , and our study contributes to this body of knowledge by focusing on actual tourist inflows and by adopting a multi-country and longitudinal perspectives. The paper links to the vast literature on residents' perceptions of tourism and support for tourism development, critical reviews of which reveal the dominance of North American case studies and insufficient attention to both established and rapidly developing tourist destinations elsewhere in the world, blurred boundaries between international and domestic tourism, little consideration of the growing global scale of tourism and the associated lack of longitudinal analyses, and, finally, an over-emphasis on attitudes towards tourism/tourism development as opposed to attitudes towards tourists. The present study indirectly addresses many of these limitations if one agrees with the contention that 'happy hosts' are also ones who have positive attitudes towards tourism and support further tourism development . --- TOURISM AND SUBJECTIVE WELL-BEING OF RESIDENTS: RELATED LITERATURE, THEORETICAL CONSIDERATIONS AND HYPOTHESES --- Defining subjective well-being Life satisfaction and happiness are the most frequently used representations of subjective wellbeing in the academic literature, and both are being adopted as core measures of well-being in policy circles. The two measures are positively correlated and are often used interchangeably. However, important differences between the two variables exist. Life satisfaction is the evaluative/cognitive component of subjective well-being and happiness is its hedonic/affective component. Life satisfaction draws on how people remember things and think about life, while happiness draws on how people experience life . Some differences also arise in their relationships with other variables. For example, life satisfaction has been shown to generally increase with education whereas the relationship between education and hedonic measures of well-being is less clear-cut; similarly, happiness tends to saturate with income beyond a certain point and life satisfaction does not . Recently, in their guidelines on measuring subjective well-being, the OECD have recommended using life satisfaction as a core measure of subjective well-being, and complementing it with measures of positive and negative affect whenever possible . This paper uses both life satisfaction and happiness measures and, among other things, tests whether they respond differently to tourist inflows. Despite an increasing use of the subjective measures of well-being by both policymakers and academics, a common criticism of life satisfaction and happiness indices is that they are selfreported and subjective constructs. Questions on which they are based can be understood differently across space and time, which makes it potentially difficult to make interpersonal, international and intertemporal comparisons . However, the subjective measures of well-being have been extensively validated via psychological and brainscan research, and shown to be reliable, consistent and comparable measures of individual wellbeing . --- Perceptions of tourism impacts and subjective well-being: review of related literature Recent literature suggests that the perceived value of tourism is an important positive determinant of residents' quality of life and subjective well-being. For example, Woo, Kim, and Uysal , using a sample of 407 respondents across five tourism destinations in the US, found a positive association between the perceived value of tourism and the overall quality of life , as well as its non-material and material domains. Moreover, the study revealed that the overall quality of life was positively associated with support for further tourism development. Kim, Uysal, and Sirgy , using a survey of 321 respondents from Virginia, found that individual perceptions of the economic, social, cultural and environmental impacts of tourism significantly predicted, respectively, material, community, emotional, and health and safety satisfaction. The study also found that the strength of the relationship between various tourism impacts and well-being domains varied according to the stage of tourism development of the respondents' community/place of residence: the relationship between the economic and social impacts of tourism and satisfaction with corresponding life domains was strongest in the maturity stage of the tourism development cycle, while the strength of the cultural and environmental pairs peaked during the decline stage. Next, based on interviews with over 1,000 respondents in Arizona, Andereck and Nyaupane highlighted the importance of not only the perceived value of tourism on a particular aspect of an individual's life, but also the significance and quality of this aspect of life for the individual. Thus, a local resident may consider that tourism improves the quality of cultural life in a community, resulting, for example, in more festivals and fairs. However, the resident's wellbeing will be positively affected only if he/she considers festivals and fairs personally important or if he/she thinks there are currently not enough of them. Nawijn and Mitas , drawing on a survey of 373 respondents in Palma de Mallorca, found that a positive evaluation of tourism is a significant determinant of satisfaction with health, interpersonal relationships, friends, and services and infrastructure. The association between perceived tourism impacts and happinessthe affective component of subjective well-being -was, however, much weaker, which the authors explained by the fact that happiness is affected by one-off events rather than constantly present life characteristics. Finally, Nguyen, Rahtz, and Shultz , using data collected through an ethnographic approach in the La Hang community of Vietnam, found that local citizens, and especially older people , felt that their quality of life had improved because of the implemented tourism development policies. These studies have much in common: they concentrate on communities that have hosted tourists , and generally adopt a static perspective, i.e. particular communities are observed only at one point in time . Importantly, the central variable in all these studies is the residents' perceptions of tourism impacts, and these perceptions are generally found to be positively associated with various manifestations of subjective well-being. What remains less well understood is how the subjective well-being of residents responds to changes in actual tourist arrivals. This is the main question asked in this paper, and the remainder of this subsection will provide the intuition behind possible answers to this question, conceptualizing the channels through which tourist inflows might affect residents' subjective well-being and outlining testable hypotheses. --- Tourist inflows and subjective well-being of residents: possible channels and hypotheses to be tested Tourist arrivals can affect residents' well-being through at least two channels. First, tourism affects various domains of residents' lives and, consequently, their subjective well-being; note that residents may or may not be aware that these effects come from tourism. Second, tourists affect residents' well-being through actual encounters. In addition, it can be argued that, within a particular country, tourist inflows can affect the well-being of residents who live in both tourist and non-tourist areas. Take a local resident living in a tourist destination. Tourism may affect -both positively and negatively -economic, social, cultural and environmental domains of his/her life, and the interplay of these effects is likely to have an impact on the resident's overall well-being. These effects may differ across the tourism development cycle. During the early stages of the cycle, one might expect that an increase in tourist arrivals will result in relatively high benefits and relatively low costs . As the locality becomes more established as a tourist destination and tourist inflows grow, the scope for economic and social improvements for local residents reduces and the scope for damage increases . Taken together, the subjective well-being of residents living in tourist areas could increase with tourist arrivals during the incipient stage of the tourism development cycle and decrease during the rapid growth stage. This reasoning links to the literature on the perceived effects of tourism on residents' subjective well-being . In addition, Kim, Uysal, and Sirgy highlight the role of the tourism life cycle on explaining the relationship between perceived tourist impact and well-being, and Vargas-Sanchez et al. document more negative attitudes towards additional tourism development in areas with higher tourist density. A crucial difference between the perceived impacts research and the current study is that we assume that a resident may or may not associate tourism impacts with tourism. For example, crime or environmental problems caused by tourism may be perceived by locals as coming from other sources or locals may have no idea what contributes to them, yet such negative tourism externalities will still reduce residents' well-being. Now consider people living outside tourist destinations. As tourism develops elsewhere in their country, people become aware of the economic and social benefits that tourism brings to tourist destinations. This may affect subjective well-being both positively and negatively. On the one hand, residents in non-tourist areas may become happier from knowing that their fellow citizens living in tourist destinations are gaining jobs and enjoying richer social lives. People in non-tourist areas may even directly benefit from country-wide tourism, if the growing tourism industry generates extra demand for goods and services produced at non-tourist localities ; note that here again residents may or may not be aware that these benefits are generated by the tourism industry expanding elsewhere in the country. On the other hand, as tourist numbers grow elsewhere in the country, people in non-tourist areas may realise that they live in a place which is not attractive enough for visiting. A feeling that life is getting better elsewhere -even if it is not necessarily getting worse where one lives -may result in a sense of relative deprivation, which, in turn, can have a negative effect on subjective well-being . As tourist arrivals grow, tourist destinations are more likely to encounter social and environmental problems. People in non-tourist areas might become aware about these problems through media: for example, noise, crime, environmental, and loss-of-identity issues brought about by large tourist inflows are likely to be covered by the national news channels. This may render residents less happy. Residents of non-tourist areas may also feel that they do not benefit from the economic, social and cultural opportunities generated by tourism, but are still affected by the industry's environmental externalities; Bestard and Nadal use this conjecture to explain why the Balearic Islands' residents living in municipalities with a lower density of tourism have more negative attitudes towards tourism. On the whole, it is reasonable to expect that people living outside tourist destinations can also be affected by tourism to their country. The net effect is likely to be neutral during the early stages of the tourism development cycle and become more negative as tourism in the community rapidly grows. The second channel through which tourist inflows may affect the well-being of residents relates to actual encounters/contact with tourists. When tourist inflows are relatively low, people living in tourist destinations may enjoy interacting with guests, helping them to get around, practicing foreign language skills and feeling proud of the local community. However, too many encounters with tourists, which happens when tourist inflows are relatively high, can result in more discontent, and even hostility, than enjoyment . As such emotions are part of individuals' subjective well-being, one might again expect tourism to have more of a negative effect on the well-being of residents when tourist intensity is high. Note that people living in non-tourist areas can also have encounters with tourists. When visiting particular places within one's country of residence on a regular basis, people from non-tourist areas may notice, and find it striking, how tourist presence transforms the character of these places. A longstanding preferred seaside resort may, for example, have become a difficult-to-penetrate foreign visitor settlement, or a regional center where a resident studied many years ago may have become a prime tourist destination. So, observing increasing numbers of tourists in places to which people had been previously attached, residents may develop feelings of sadness and discontent, which, in turn, can reduce subjective well-being. Taken together, one can expect the well-being of residents living in both tourist and non-tourist areas to be affected by actual encounters with tourists. The higher the tourist inflow rate, the more negative the effect of additional tourist arrivals on resident well-being is likely to be. One must also consider the relevance of the two channels -the net effect of tourism and actual encounters with tourists -for different manifestations of subjective well-being. Arguably, life satisfaction -the cognitive/evaluative component of well-being -will be more responsive to the effects of tourism, while happiness -the hedonic/emotional component -will be more responsive to actual encounters with tourists. This is because life satisfaction draws on reflection/thinking about life whereas happiness draws on experiencing life and the effects of spontaneous events , such as unintentional encounters with tourists. On the whole, if one of the two channels dominates, tourist arrivals will not affect life satisfaction and happiness in the same manner. Finally, it can be argued that not everyone's well-being is affected by tourist encounters in the same manner. In particular, older and less educated people, as well as rural residents, are may be affected by tourism more negatively. Older people may attach particular importance to established ways of life and find that large numbers of tourists disrupt them, while young people could enjoy meeting and interacting with foreigners. 1 People with lower levels of education may not have good foreign language skills and, therefore, might experience frustration from not being able to communicate with foreign guests; in contrast, more educated residents would speak foreign languages well and feel happy at being able to establish cross-cultural dialogues. Finally, people living in rural areas might be accustomed to daily lives where people know each other, and thus find the presence of unfamiliar tourists disruptive; in contrast, life in urban areas implies frequent interaction with unfamiliar people, which may make urban dwellers more likely to accept diversity brought about by tourism. These conjectures echo the fact that the elderly, the less educated and people living in rural areas are more opposed to globalization and its various manifestations, such as immigration, free trade and imported products . Drawing on this discussion, the following hypotheses are formulated: --- H1: Tourist arrivals have a negative effect on the subjective well-being of residents. --- H2: The effect of tourism arrivals on residents' well-being is moderated by tourism density: the effect is more negative where tourism density is higher. --- H3: Tourist arrivals have a differential effect on life satisfaction and the happiness of residents. --- H4: The effect of tourism arrivals on residents' well-being is moderated by the respondents' age, education and area of residence: the effect is more negative for older, less educated and rural residents than for younger, more educated and urban respondents, respectively. --- METHODS --- Model specification The general model explaining the effects of country-level tourist inflows on the subjective wellbeing of resident populations can be expressed as follows: Subjective well-beingi,j,t = β0 + β1 tourist arrivalsj,t + β2 individual-level controlsi,j,t + β3 country-level controlsj,t + β4 country fixed effectsj + β5 year fixed effectst + error termi,j,t where the subjective well-being of individual i living in country j in year t is modelled as a function of the country-level tourist arrivals , typical individual-level determinants of subjective well-being , and country-level variables, such as GDP growth, unemployment and inflation rates . Given the repeated-cross-section structure of the data , the model includes dummy variables for all countries and years . Country fixed effects account for all timeinvariant, country specific factors affecting both subjective well-being and tourist inflows. Year fixed effects account for the time trends in subjective well-being and tourist inflows which are common for all countries included in the analysis. --- Data sources The estimation of the model necessitates data at both the individual and country level. In each ESS country-round respondents were selected using strict random sampling techniques, and the national samples are representative of the participating countries' resident populations aged 15 and over . Approximately one hour long face-to-face interviews were based on the ESS source questionnaire, which was designed in English and then translated into each language that is used as a first language by at least 5% of a participating country population. To ensure cross-country comparability, all methods and procedures related to data collection and processing were standardized across the participating countries. More information on the ESS design methodology is available on the ESS project website . The country-level data are sourced from the World Development Indicators -a collection of country-level statistics compiled by the World Bank from officially-recognized national and international sources. The dataset contains statistics on annual country-level international tourist arrivals , as well as macroeconomic indicators such as GDP growth, inflation and unemployment. --- Variables Dependent variable: subjective well-being The ESS contains two questions which are used to construct two measures of subjective wellbeing: life satisfaction and happiness. 2 These questions are: "All things considered, how satisfied are you with your life as a whole nowadays?" "Taking all things together, how happy would you say you are?" The answers to both questions range from 0 to 10 and are used as values of the two variables. --- Main regressor: tourist inflows Tourist inflows are captured by the annual arrivals of international tourists, defined as people "who travel to a country other than that in which they usually reside, for a period not exceeding 12 months and whose main purpose in visiting is other than an activity remunerated from within the country visited." To ensure these data are internationally comparable, tourist arrivals are expressed as a percentage of the host country population in the same year . Table 1 reports the average tourist arrival 2 Unfortunately, the European Social Survey does not contain questions on satisfaction with different life domains, which would allow for a more nuanced analysis. rates and their range for 2002-2013 for the countries included in the analysis. --- [INSERT TABLE 1 ABOUT HERE] --- Individual-level controls Following the empirical literature on the micro-determinants of subjective well-being, all estimations include the following individual-level controls: age and its square, years of completed education, household size, dummy variables for gender, being married/living with a partner, four household income levels , four subjective evaluations of household income , having children, unemployed and actively looking for a job, unemployed and not looking for a job, five levels of subjectively evaluated health , five types of urbanization , and a measure of religiousness, based on the question "How religious you are?" to 10 ). --- Country-level controls Controls are included for several country-level variables and major events that may have affected residents' subjective well-being as well as tourist arrivals. These variables are: GDP growth rate, inflation rate, unemployment rate, joining the European Union in the year of the interview, joining the Eurozone in the year of the interview, hosting a major sports event in the year of the interview, terrorist attack in the year of the interview or the year before, average temperature in the year of the interview and its one-year lagged value, average level of precipitations in the year of the interview and its one-year lagged value. The summary statistics of all the variables included in the analysis are reported in Table 2. --- [INSERT TABLE 2 ABOUT HERE] --- Estimation strategy Given the categorical and ordered nature of the dependent variable , it would be appropriate to estimate Equation 1 with a non-linear model, such as ordered logit or probit. However, the empirical literature on subjective well-being has often employed Ordinary Least Squares , effectively assuming cardinality of the happiness and life satisfaction indices . The OLS and non-linear models produce qualitatively similar results , and a particular advantage of estimating subjective well-being models with OLS is the ease of result interpretation. This paper follows the literature and employs the OLS as the main method of estimation. The corresponding ordered probit and logit models have also been estimated as a robustness check; the results were consistent with OLS and are available on request. To test whether the effect of tourism becomes more negative when tourism density is higher, , the tourist arrival rate in the baseline model will be replaced with its squared term: Subjective well-beingi,j,t = β0+ β1 tourist arrival rate 2 j,t + β2 country-level controlsj,t + β3 individual-level controlsi,j,t + β4 country fixed effectsj + β5 year fixed effectst + error termi,j,t Note that the tourist arrival rate and its squared term are not jointly included in the same model. This is because such a specification would assume an underlying U-shaped relationship between the tourist arrival rate and subjective well-being. It is important to note that, when estimated with OLS, the coefficients of interest (β1 in Models 1 and 2) should be interpreted as conditional correlations rather than causal effects. While a broad range of potential country-level confounding variables have been included as controls, there may still be some omitted variables driving both subjective well-being and tourist arrivals. To mitigate this endogeneity issue and move closer to causal evidence, this study employs the instrumental variable method. This method relies on the availability of an instrument -a variable that is highly correlated with the endogenous regressor and that affects the outcome variable only through this endogenous regressor. The average of the tourist arrival rates in years t-1 and t-2 will be used as an instrument for the current tourist arrival rate: it is expected that past tourist arrivals predict the current arrival rate well, and one can reasonably assume that they have limited direct influence on the current well-being of the residents. The estimation consists of two stages: 1) in the first stage, the tourist arrival rate is regressed on the instrument and all the control variables, and 2) in the second stage, the predicted values of the first stage dependent variable are used as a regressor, alongside all the control variables. The standard F test of the excluded instrument will be used to test its relevance. 3 For more information on the instrumental variable technique and its application in tourism research, see e.g. Belenkiy and Riker . Concerning the temporal structure of the data, the ESS is conducted biannually with each round spanning over two years. Information is available as to which year a particular interview was conducted, and this information reveals that within several country-rounds the interviews were conducted in both years of the round. For example, looking at the respondents from Belgium in ESS Round 1 , 40% were interviewed in 2002 and 60% in 2003. This effectively allows increasing the temporal variation of the data, which is why the empirical analysis relates the subjective well-being of residents to tourist arrivals in a particular year . All estimations include both the design weight and the population weight, 4 as recommended by the ESS architects. In addition, given that individual-level outcomes are explained by country-level variables, the standard errors are clustered at the country level. While the absence of clustering results in downward biased standard errors and inflated t-statistics , clustering standard errors when the number of clusters is relatively low may lead to the over-rejection of statistically significant estimates . Keeping in mind that the number of clusters in our analysis is close to the upper limit, the results reported in this paper will represent conservative estimates of the regressors' t-statistics. Iceland or Cyprus. One might wonder how the results would differ if small countries were accorded the same weight as large countries. Estimating the model without the population weight produced qualitatively similar results to the population-weighted case. This means that the effect of tourist inflows on subjective well-being is not driven by the size of the country. --- RESULTS --- OLS results Table 3 reports the results of the OLS fixed-effects models for the whole sample. In the linear specification the coefficient of the tourist arrival rate is negative and significant at 10% in the life satisfaction model but statistically insignificant in the happiness model. In the quadratic specification , the squared term of the tourist arrival rate is negative and highly significant in the life satisfaction model, and negative but only marginally significant in the happiness model. These results lend support for Hypotheses H2 and H3 and, to a more limited extent, Hypothesis H1. --- [INSERT TABLE 3 ABOUT HERE] To get a better understanding of the size and nature of the estimated relationship between the variables of interest, Figure 1 plots the predicted values, based on the specification presented in column 3 of Table 3 , of life satisfaction as a function of tourist arrival rate, which in our sample ranges between 13 and 250% of a country's population. The graph shows that, while life satisfaction decreases with an increasing tourist arrival rate at all levels of tourism intensity, the association becomes stronger as tourism intensity increases. For example, a 50 percentage point increase in the tourist arrival rate would be associated with a reduction in residents' life satisfaction of 0.04 units in a country with a relatively low initial tourist arrival rate . The same percentage point increase in tourist arrivals would be associated with a reduction in residents' life satisfaction of 0.15 units in countries with an initial tourist arrival rate equal to 100% of the population, and by 0.28 units in countries with an initial tourist arrival rate equal to 200% of the population. --- [INSERT FIGURE 1 ABOUT HERE] The results of the socio-demographic and country-level controls comply with the empirical findings of the broader literature. Subjective well-being has a U-shaped relationship with age: life satisfaction decreases with age until the threshold age of 36 and increases thereafter . Women and respondents who are married or live with a partner have higher subjective well-being. Larger household size is associated with higher levels of happiness , and having children tends to reduce both life satisfaction and happiness, other things equal. More educated respondents tend to feel happier but not necessarily more life satisfied. Income, and especially its subjective evaluation, is a strong positive predictor of subjective well-being, although its effect on happiness is smaller than on life satisfaction. The unemployed, less religious and less healthy people report lower levels of subjective well-being, while people living in rural areas are somewhat more likely to be happy and, especially, life satisfied. Concerning the country-level controls, higher GDP per capita growth and lower unemployment rates are, as expected, associated with higher levels of subjective well-being. Interestingly, higher inflation is also associated with higher happiness and life satisfaction. This should not be surprising, as our sample consists mostly of high-income and upper middle-income European economies. Over the period 2002-13, higher inflation in these countries was associated with economic booms, while lower inflation was more typical to recessions. Joining the Eurozone, but not the European Union, provides a boost in subjective well-being, while hosting an international sports event is, somewhat unexpectedly, associated with a drop in both happiness and life satisfaction. A terrorist attack in the past two years reduces subjective well-being. Among the weather-related variables, only higher average temperatures in the previous year are associated with higher levels of life satisfaction. --- Instrumental variable regression results Table 4 shows the results of the full-sample models estimated with the instrumental variable technique. In both linear and quadratic specifications, the instrument is a strong positive predictor of the endogenous regressor , with the values of the first-stage F test of excluded instrument by far exceeding the commonly accepted threshold value of 10. The second stage results of the instrumental variable estimation suggest that tourist arrivals have a negative effect on the residents' satisfaction in both linear and quadratic models ; the magnitude of the coefficients is in line with the corresponding OLS regressions reported in Table 3. The coefficients of the tourist arrival rate are statistically insignificant in the happiness models, implying that the tourist arrivals have no effect on the residents' happiness levels. Overall, the results support hypotheses H1-H3: tourist arrivals reduce residents' subjective well-being, this link gets stronger with tourism intensity, and tourist arrivals affect only life satisfaction . [ --- INSERT TABLE 4 ABOUT HERE] Sub-group results Table 5 reports the results of the models for younger and older people, those with relatively low and relatively high levels of education, and rural and urban residents. Similarly to the full-sample estimations, the model explaining life satisfaction with the squared tourist arrival term appears to be the most precise in the OLS estimations , implying a negative association between life satisfaction and tourist arrivals across all sub-groups. Differences, however, exist in the size of the estimated coefficients: the negative association tends to be stronger among the older respondents, those with lower levels of education and people living in rural areas relative to their younger, more educated and urban counterparts. The results of the instrumental variable estimations support a causal negative effect of tourist arrivals on the life satisfaction for all sub-groups, except older people, where the coefficient is negative but insignificant. In terms of the effect magnitude, the greatest difference is obtained for rural residents , while the difference is lower in the education samples. Overall, both the OLS and instrumental-variable results partly support hypothesis H4: tourist arrivals are more detrimental for the subjective well well-being of rural than urban residents. Meanwhile, the evidence for the age and education groups is less clear-cut. [INSERT in Iceland. The model predicts that such increases in the arrival rate would be associated with a fall in life satisfaction of up to 0.20 units on a 0/10 scale -a non-negligible effect, comparable to a half of the positive effect on life satisfaction of being married/living with a partner. In contrast, residents of countries where tourist inflows are lower and/or do not change much over time would not experience a significant fall in life satisfaction. The examples would be Germany, the UK, Russia, Poland, Ukraine , and Spain, Belgium, Ireland, France and Italy . The finding that tourist arrivals reduce life satisfaction, especially where tourist arrival rates are large and rapidly growing, has policy implications. While tourist arrivals are likely to generate economic growth and employment, tourism may also make residents less life-satisfied. This is particularly relevant to policies aiming at promoting large tourist inflows in short periods of time. A recommendation here would be to develop policies which would result in gradual rather than large, one-off increases in tourist arrivals. The second finding of this study is that tourist inflows affect negatively life satisfaction, while their relationship with happiness tends to be insignificant. If one assumes that tourists affect the life satisfaction of residents through the evaluation of tourism effects , and happiness is affected by actual encounters with tourists , the results would suggest that the evaluation of tourism impacts is a more important driver of subjective well-being than actual encounters with tourists. These findings and reasoning corroborate the work of Nawijn and Mitas , who find that the perceived impacts of tourism are associated with life satisfaction but not happiness. Finally, the analysis showed that life satisfaction of rural residents tends to decrease with tourist arrivals to a greater extent than the subjective well-being of their urban counterparts. It is possible that for rural dwellers the net benefits from tourism are low and actual encounters with tourists result in more discomfort than joy. These findings are relevant for decision makers wishing to promote tourism in rural areas. --- Limitations and directions for future research While this work represents the first step towards uncovering and conceptualizing the effects of tourist arrivals on the subjective well-being of tourist-receiving populations, it has several limitations, which open directions for future research. First, the study suggested two channels through which tourist arrivals might affect residents' subjective well-being , but the data at hand provided very limited possibilities to test the relative importance of these channels for well-being. In addition, it is possible that the net effect of tourism and tourist arrivals have a differential effect on the domains of life satisfaction , as well as on different manifestations of positive and negative affect . While recent work has already considered the links between these more nuanced measures of well-being and perceived tourism impacts , future research might study their relationship with actual tourist arrivals. Second, this study has used a repeated-cross-sectional survey to determine how residents' subjective well-being changes with tourist arrivals over time. Given that all country-wave samples were randomly drawn from the underlying populations, this should not lead to issues of sample selection, which could otherwise bias the results. However, ideally one would want to use panel data, where the same respondents are observed over time. Large panel surveys have been recently used to determine the effects of holiday-taking on tourists' wellbeing , and such data may also provide valuable insights into the effects of tourist arrivals on the well-being of resident populations. Third, while this study has conjectured that tourism may have an impact on the well-being of residents living in both tourist and non-tourist areas, a distinction between the two groups has not been made in the empirical analysis. Future research could use regional statistics to identify tourism intensity at a more local level , and perform a longitudinal analysis of the relationship between tourist arrivals and residents' well-being at a geographically more disaggregated level. Finally, the study has explicitly focused on the effects of international tourist arrivals. In many countries, domestic tourist flows are at least as large as their international counterparts, and future research could consider whether the subjective well-being of residents responds differently to the two types of tourism.
Residents' Subjective Well-being in Europe * While there has been a growing interest in the relationship between perceived tourism impacts and residents' quality of life, little is known about how residents' well-being is affected by actual tourist arrivals. This paper studies the effect of international tourist arrivals on the subjective well-being -happiness and life satisfaction -of residents in European countries. Data come from the six waves of the European Social Survey, conducted in 32 countries in 2002-2013. The results suggest that tourist arrivals reduce residents' life satisfaction. This negative relationship tends to be more pronounced in countries where tourism intensity is relatively high, as well as among people living in rural areas. In addition, tourist arrivals have a greater negative relationship with the evaluative component of subjective well-being (life satisfaction) than its affective component (happiness).
Introduction During a health crisis, people are often worried about their safety and healthcare facilities. In such circumstances, the number of people utilizing health services such as those covered by the Medicaid and Medicare programs increases . This increase has been associated with the generation of medical data including hospital records, personal data such as contact details and private data such as diagnosis and testing information. Unfortunately, there are numerous cases of negligence due to which data leakages happen thereby jeopardizing users' privacy during health crises. Often during a health crisis, user privacy is not given much importance when planning response efforts . User data is generated at a rapid pace because of developments in telehealth/telemedicine, remote work, and unique supply chains. Online health counselling and therapy, virtual doctor visits and remote health monitoring require personal information from the users. This information can be a potential target for adversaries to compromise user's privacy. There is a high probability of a lack of oversight regarding user privacy during emergencies. It comes as no surprise then that during health crises, incidents of breaches of user privacy have increased exponentially . As pointed out in the literature on the framework for formulating Bright Information Communication Technologies , during times such as the current pandemic there is an increase in public health concerns owing to an increased reliance on the internet and the need for privacy often gets overlooked at a time when it is even more critical to address not just cybersecurity but privacy as well . In accordance, researchers have called for developing solutions for global trust building so that users' privacy concerns are alleviated with an emphasis on preventive cybersecurity and proactive privacy preservation . Social media is a rich source for investigating privacy discussions during health crises because it allows us to gather organic information pertaining to tracking and sharing of trending health topics as well as digital health data . The context of social media has seen increasing research and is particularly well suited to examine conversations around privacy as it acts as a platform for individuals to share controlled information at their own will . Despite this, the extraction of privacy-related insights from social media in the aftermath of a health crisis have hitherto not been addressed in literature. Along this backdrop, we ask the following research questions: 1) What aspects of health privacy do social media users discuss during the COVID-19 pandemic? and 2) what are the privacy discussions by the public around potentially the most invasive topics of contact tracing and surveillance? In addressing this question, this paper investigates privacy discussion around public health on a social media platform, Twitter, in the context of the ongoing COVID-19 pandemic. Using topic modeling approach, we conduct two studies to analyze social media messages on Twitter to ascertain what privacy topics related to their health information people are discussing during the COVID-19 pandemic. In study 1, we analyze user tweets and highlight the major categories of health privacy that social media users are tweeting about. In Study 2, we draw on the insights from Study 1 to create a taxonomy of the most salient privacy and cybersecurity discussions around the topics of contact tracing and digital surveillance that social media users on Twitter are engaged in. Our research adds to the growing body of knowledge about public interest in privacy concerns, contact tracing, and privacy violations in crisis situations like the current COVID-19 pandemic. This investigation is important because the different aspects of privacy discussed on Twitter can help to guide policymaking by providing early insights into the concerns uppermost in people's minds. The insights from these discussions can help to strengthen frameworks to address and alleviate privacy concerns of people, with respect to technologies such as contact tracing and digital surveillance. The rest of the paper is organized as follows. In the next Sect. 2 we discuss the literature on user privacy in social media conversations. This is followed by the methodology Sect. 3 which describes the LDA topic modeling and hierarchical clustering approach to extract health privacy tweets of the users. In the following Sects. 4 and 5 we explain Study 1 and Study 2 respectively, and extract the various issues that users discuss on social media regarding health privacy. We also interpret the findings of our two studies, elaborate on privacy issues, and explain user privacy conversations that users discuss about the most on Twitter. The following discussion Sect. 6 explains the implications of the research, study contributions and future work. Finally, in the conclusion Sect. 7 we discuss the limitations of the study and outline our future work. --- Literature Review In this section, we discuss three related streams of literature on privacy issues from the context of healthcare data, contact tracing, and the role of social media in raising awareness during crisis events, which together lay the theoretical foundation of our study. The first stream focuses on privacy issues and addresses the concerns and benefits around the discussion of health information on social media. The second stream focuses on the core issues that are specific to health crisis such as COVID-19 where contact tracing is important to mitigate the risk of disease spread but may come at a cost of compromising the user privacy. The third and last stream focuses on the role of social media during crisis events. --- Privacy Issues with Healthcare Data The mode of accessing health information is changing as internet technologies, artificial intelligence and social media become more widely used . On the internet, it is possible to discuss health information without alienating others or using an inaccessible language of healthcare . With the spread of new infections and diseases, a free form of sharing health information is seen as having a positive impact on society. However, there are growing concerns about information privacy in relation to this type of free information sharing . Recent studies on privacy have found that as internet adoption and technology integration into healthcare grows, there is a greater risk of user privacy being compromised . In the event of a healthcare crisis such as influenza, large-scale testing is required to halt the spread of the virus and identify any potential side effects from early-stage vaccinations . During COVID-19, much of the industrialized world saw an increase in infections which forced governments to enforce lockdowns and individuals to remain indoors . To combat the pandemic, a variety of strategies have been implemented, including large-scale testing of patient samples. In such times, it is unavoidable to collect personal identifying information, which raises concerns about data loss. The number of reports of privacy breaches involving patient information has risen dramatically . --- Privacy Concerns, Contact Tracing, and Privacy Violations during Crisis During the COVID-19 pandemic, people have relied on collaborative online video conferencing solutions to work and study remotely, schedule appointments with doctors using telehealth facilities. Scholars have also noted that a lack of understanding of privacy policies can influence whether or not people use telemedicine and virtual healthcare . Remote work has its fair share of privacy violations that can be counterproductive to the whole point of moving to online operations. Another strategy for combating the virus is the increased use of contact tracing efforts by governments or other related agencies, which are tasked with monitoring the virus's spread. Contact tracing refers to efforts by publichealth workers to track down potentially infected individuals . Traditional contact tracing is used in situations of contagious outbreaks and relies on the knowledge of interpersonal network of physical interactions among people. However, due to privacy concerns of people and collection of noisy data, such tracing networks are difficult to reconstruct accurately . The authors note that communication traces obtained through mobile phones can be good proxies for physical interaction and may provide a valuable tool for contact tracing. Thus, during the crisis, several mobile applications were released by national governments to track the movement of its citizens-NHS COVID-19 , Aarogya Setu , COVIDSAFE , Apple's Exposure notifications system. Recent contact tracing technology and methods are a matter of significant privacy concerns on the internet . In summary, there are numerous concerns about privacy violations during crisis situations. --- The Role of Social Media during Crisis People search for information in times of crisis, especially in online environments. During this time, with a lack of consistent information from trusted agents there is a desire to gather as much information as possible, especially from social media. Social media, such as Twitter, has been effective in allowing public communication about the events of an emergency or crisis . In health crises, it can provide early and valuable information about the situation and educate communities about preparedness measures, reduce the intensity of negative messages and promote positive messages . During health crises social media platforms can also play an important role in the lives of its users. Schillinger et al describes how they can serve as an outlet for disseminating information that promotes public health awareness. Zhou et al focus on how such platforms can help to improve the quality of care and communication. They can also serve as a cost effective and convenient venue for health intervention, patient health self-management, patient education, drug and healthcare service advertisements, etc. In addition, the social media context is particularly suited for examining conversations about privacy . Social media can serve as an outlet for people to express their views about the privacy of users during COVID-19. By enabling the exploration of social media content, we can extract intelligible information about people's privacy needs and concerns. While concerns about privacy on social media platforms are well recognized in the academic community, there is currently a lack of research in identifying user concerns in an automated manner . Organizations commonly use semi-structured interviews and qualitative research to identify user concerns specific to a domain or a specific event . However, this is a time-consuming and laborious process, and in a global event like the COVID pandemic, identifying data privacy concerns in an automated manner is critical. Despite this, the extraction of privacy-related insights in the aftermath of the health crisis has not received much attention in the literature. In accordance, this study examines privacy topics during the COVID-19 pandemic, outlining various issues discussed in the tweets. While some of these issues such as privacy policies, violations, and lack of transparency) have been previously studied by researchers from non-social media contexts, the resurgence of privacy concerns on Twitter during the pandemic underscores the importance of such discussions of health privacy specific to the context of social media networks for policymakers. --- Methodology Given the extensive use of Twitter during crisis communication management, researchers have adopted various techniques to extract meaningful information from tweets using text mining techniques like content analysis , social network analysis and clustering . Recently, sentiment analysis from subjective phrases has been combined with a machine learning algorithm to produce better disaster data classification accuracy . We conduct two studies in this paper and follow a data driven exploration approach, similar to Bachura et al. , to conduct exploratory research on data from Twitter conversation regarding users' health privacy discussions. A computational analysis of over 273 million tweets resulted in the extraction of 9 key health privacy topics in Study 1. Based on the public display of users' health privacy concerns shared on Twitter, we further distilled these topics into 3 main privacy issues in Study 2. Studying such public displays of privacy concerns are important for governments, organizations and policymakers. The social sharing of health related information concerns can provide clear guidance not only to organizations, but also to governments, allowing them to make informed decisions about what measures are working during a disaster and where they should focus their immediate attention. Researchers note that such social sharing is an important source of interpersonal interactions which people engage in to overcome from emotional experiences . Various topic classification methods are studied in combination with sentiment analysis to provide a generalized framework of how sentiment around a given topic changes over time in the study using disaster social media tweets during the Kerala floods . For analyzing sentiments, the LDA and Hierarchical Clustering methods have been shown to work well. Information dissemination and the issue of credibility are another important stream of research related to crisis communication management, such as the COVID-19 pandemic. Understanding the underlying topics on a tweet-by-tweet basis is critical in addressing this issue. The authors were able to answer the question about user retweeting behavior by treating each tweet as if it represented only one topic discussion and by looking at the tweet characteristics . Building on the prior literature related to the crisis response and topic classification, in this paper, we utilize hierarchical clustering, a text-mining approach, to obtain semantic patterns from tweets over a specific time period so that we can effectively model the various user privacy issues in the COVID-19 context. Twitter data can be effectively used to detect subtle variations in public response which are ever more visible during the COVID-19 pandemic. This study presents an analysis of tweets produced beginning from January 20, the day China officially confirmed the infection outside Hubei province until July 2020. We used Twitter streaming API to collect the tweets based on the keyword coronavirus and added COVID-19 to our list when the WHO officially named the disease. --- Data Description We developed a Python script that calls the streaming API and searches for keywords anywhere in the tweet's text and extracts the tweet and the tweet characteristics, including retweets count, the tweeting user's screen name, the tweet's time, and hashtags. By the end of July, we collected around 273 million tweets for 194 days. Figure 1 shows the records count by days. There are considerable number of days where the daily tweet count crossed 2 million tweets a day. We utilized 6 months of tweets from January 20, 2020 to July 31, 2020 owing to a continuous stream of data during this period. The distribution of tweets across this period can be seen in Fig. 1. The 273 million tweets are representative of user discussions on the social media platform about COVID-19. Before we analyze the health privacy topics within users' conversations in these tweets, we have to extract the relevant tweets. This was done in two steps: First, we used a keyword-based search to extract privacy-related tweets by including keywords 'privacy' and 'confidentiality' in our search criteria. Second, we matched keywords specific to health using an LDA topic model created from the relevant web pages providing health updates on COVID-19 . To create topic models, we used the Python Gensim package's LDA model. Gensim includes several text processing methods, such as removing stop words and lemmatization . Additionally, we followed a heuristics approach to pre-process the text data to filter Twitter specific characters and filtered URL links, user mentions before passing it to the Gensim package LDA method. Gensim functions are optimized to converge in the fewest number of iterations and provide the topics as quickly as possible. --- Extracting Health Privacy-Related Tweets Topic model provides keywords that are closely related to each of the topic. We systematically analyzed the words under each topic, to represent unique keywords, and classified the tweets as health-related tweets if any of the respective keywords were present in the tweet text. Figure 2 shows the distribution of health privacy-related tweets. It shows the magnitude of discussions that relate to health privacy across our dataset with significant spikes in the months of March and June as the infection spread accelerated during these months. We extract insights from the health privacy tweets in a sequence of two studies. In Study 1, we determine the major topics on the different aspects of health privacy being discussed by Twitter users. In Study 2, we delve further into the topics which were most salient in Study 1. For this deeper investigation into the main topics of cybersecurity and privacy, we also include additional tweets in the second study as the data for two additional months became available up to September 2020. Figure 3 presents the process for extraction and analysis for Study 1 and Study 2. These are further elaborated subsequently in the corresponding sections. --- Study 1: Health Privacy Topic Discussion in Twitterverse In this study, we begin our detailed analysis by identifying the critical health privacy topics that are at the forefront of discussions and concerns voiced in our data using the process characterized in the upper half of Fig. 3. Owing to the inherent nature of conversations on social media that continue for several days, we decided to use a topic modeling approach reinforced with hierarchical clustering. This enabled us to get new topics each week based on their popularity which was determined by the coherence score. We also utilized reverse boosting to ensure that popular topics in initial weeks did not affect the algorithm in the coming weeks by assigning additional feature weights to recent discussions. The model used the timestamps from tweets to infer the temporal progression of emerging topic discussions in the Twitterverse. The topic model generated the most popular weekly topics for 14 weeks. There were 549 unique topics within this period which directly mapped to Fig. 2 Distribution of health privacy tweets 114,296 individual tweets. We have also used the structural topic model to present the high-level topics within the overall privacy discussions . From our analysis, we identified 9 distinct overarching health privacy topics. Consistent with the number of topics, we ran the STM to capture the 9 distinct topics in the overall tweets . To get the major topics of health privacy, we followed a topic distillation approach based on the topic text and the frequency of topic occurrences. To this end we compared the text content of the topic with our set of keywords. For example, if a topic contained the words 'patient information' and another topic contained 'patient reports', it was distilled under the bigger 'patient data confidentiality' topic. Using this topic distillation approach, the individual 549 health privacy topics were read by the first and second authors, and classified based on their content. After the initial round of distillation, there were 46 interrelated topics which were further distilled to 16 topics with significant differences within their content and minimal overlap. These topics were merged into 9 distinct overarching health privacy topics shown in Table 2 that provides a description of the distilled set of 9 privacy topics as well as a sample of tweets. These 9 privacy topics were related to 3 major topics relating to digital privacy, lack of transparent privacy policies and privacy violations. These topics are grounded in prior research on privacy with articles addressing issues of digital privacy , privacy violations , and lack of transparent privacy policies with respect to governments' use of data . To understand the underlying topics, we ran the hierarchical clustering algorithm. The df-idf metric was used to detect the discussion's central topic over a given period . We used bi-grams to detect events by comparing bi-gram frequencies daily with those of the preceding days. The df-idf Fig. 3 Study 1 and 2 process model approach clusters bi-grams rather than the regular document cluster approach that uses tf-idf technique to cluster documents within a given time interval. A regular clustering algorithm based on the tf-idf technique considers all these messages as a single large cluster and may ignore the emerging topics from new incoming messages , making it difficult to identify the development of new topics. As the primary focus of the df-idf approach is word co-occurrence, df-idf provides greater accuracy in extracting the central discussion tweets for each time interval. Bi-grams naturally cluster the cooccurring words together and provide an efficient cluster of sentences than the unigrams algorithm . Once, the central tweets were extracted, we performed the content analysis to group the extracted focal tweets into different categories. Through this approach, the 9 health privacy topics were related to user discussions about data privacy, privacy policies and privacy violations. Data privacy has been a contentious issue ever since the emergence of the Big data era . The highly unstructured form of data as well as the continuous stream of data points makes it all the more difficult to isolate privacy incidents. Privacy policies can safeguard people's privacy. It has been observed that in times of crises privacy policies are often not clear and sometimes there may even be a tradeoff that results in further privacy loss . As for privacy violations, crisis or not, they are commonplace as well as difficult to track. Palen and Dourish had observed that privacy is visceral in a networked world and violations do occur frequently, which rings true even in this contemporary time. We have visualized the trends of the central discussion of the topics over the timeline in Fig. 4. --- Data Privacy Much of the work has shifted online during the pandemic including increase in Telemedicine . In addition, on account of the increased infection spread as well as testing of those infected, it has resulted in the generation of large health data. Therefore, conversations on Twitter rightly mimic this pattern as evidenced by the significant peaks seen in the health data graph. The peaks correspond to the general perception of health-related discussions during the month of May rising significantly with the total number of COVID-19 related deaths exceeding 100,000. --- Privacy Policies The major topic of discussion revolves around the lack of transparency. People online are sharing their views on privacy and its implications for data regulation policies, guidelines, and rules. We see from our analysis that users regularly tweet about the absence of strong privacy policies that can govern data collection and storage. We see from the policy graphs a consistent discussion regarding privacy policies during the earlier days of transmission of the virus. As the information percolated to the masses, we see these discussions trailing off towards the end of our dataset as more robust health policies regarding data collection were put in place by state and federal authorities. --- Privacy Violations We see from the graph that privacy violations are the most discussed topics during our dataset time period. They begin slowly, because of a tepid response to formulating contact tracing guidelines, but once the cases started increasing and as a result of an influx of contact tracing mobile applications , more tracking efforts were made. We see consistent spikes in these issues being discussed on Twitter. Another important issue was how medical negligence has increased and users shared their views regarding health data violations, hospital administrations and leakage of health records. --- Study 2: Discussions about Contact Tracing and Digital Surveillance Topics in Twittersphere Within the 9 health privacy topics, tracking issues had the most frequency of occurrences and a majority of the discussion on Twitter revolved around these two topics -contact tracing and surveillance. Of the 549 topic models we had 1 3 initially obtained from our topic modeling approach, over a 100 applied to these two topics alone. Since COVID-19 first started spreading rapidly in March, these two topics have endured through our entire datasets with consistent discussions being generated across different weeks. It has ushered in new surveillance technologies that seek to parse people's digital footprints . The level of information collected in response to contact tracing efforts has been unprecedented . Since the two major health privacy topics and areas of discussions revolved around contact tracing and digital surveillance , we decided to conduct a follow up study using a second topic model that utilized n-gram word embeddings. These n-gram relates to using either one-word searches over the dataset or a combination of two subsequently occurring words or three subsequently occurring words to generate the topic of interest for each of the weeks in the dataset. Using this approach, we were able to generate topics from our list of keywords, which included a mix of n-gram words, that capture more relevant and coherent topics. The model focused exclusively on surveillance and contact tracing discussions with respect to health privacy concerns of people on social media on the initial dataset plus an additional two months of data up until September 30, 2020. After running the model on this narrower search criteria, the number of topics found sharply decreased and showed more direct word associations with the tweet content. In total we extracted 155 unique topics that related to either surveillance or tracing or both which roughly mapped to around We again proceeded with the topic distillation approach of content analysis and frequency occurrences on the newer reduced set of 155 topics. The various topics discussed were highly correlated and after the first round of analysis the topics were reduced to 75 interrelated topics of discussion. For example, these interrelated topics included some that discussed 'increase in surveillance technology' and others that discussed a similar topic 'increase in surveillance programs/ networks'. The grouping of similar topics helped to reduce the number of topics under consideration and laid the foundation to creating a smaller non overlapping set of privacy issues, that could be explained further. In this regard, the 75 topics were then distilled into 6 non-overlapping major privacy topics related to surveillance and contact tracing. Table 3 represents the 6 major privacy topics and key issues along with their representative tweets. These topics relate to the major discussions on Twitter during the period of Study 2. In these discussions, new issues emerged that corresponded to users' discussions 1 3 regarding newer technology and infrastructure being developed during the pandemic that can have serious impact on privacy both in current times as well as in the future. The Internet users' information privacy concerns framework proposed by Malhotra et al. can help understand online consumers' concerns for information privacy. The first component that impacts users in any online setting is the collection of data. Data has been famously referred to as the price you pay for free services on the internet. Data collection is thus the first issue that might affect people's privacy decisions and their intention to engage or share their personal data. The second component is control which manifest into the perceived level of control that users feel they have over their data. If users believe that they have control over what is shared in the online space regarding their personal information, it manifests into lower privacy concerns. The final component is awareness of privacy practices. It translates to the level of disclosure and knowledge users are provided about the usage of their data. It is related to being transparent upfront about the intended use of people's data, and the purpose of data collection should be clearly communicated to users in order to inspire confidence in them to share personal details. Through the two studies, we have ascertained the different privacy issues that users discuss online during the COVID-19 pandemic. We observe that our findings from Study 2 closely align with the existing privacy mechanisms of privacy issues discussed by Malhotra et al. . Using our findings from Study 2 we explain how the major six topics revealed from our topic modeling approach relate to the privacy components. --- Data Collection Two major privacy topics from our topic model that correspond to it are individual and community surveillance. The key issues within each of the surveillance topics were representative of the context that data collection for the purposes of contact tracing has. Within individual surveillance topic, the privacy issues raised by users included the access to phone data, maps data and location data. Apart from this, the encroachment of personal freedom and the dwindling civil liberties afforded to citizens were other major issues being discussed. Under community surveillance topic, the Twitter users discussed issues relating to the widespread tracking of travel and itinerary details, the use of mass surveillance programs to collect data and community tracking of affected populations. As noted by Lyon , individual, institutional and community surveillance are all closely linked to personal data collection from users. It relates to users' choice of providing their personal data, which in some scenarios may not exist such as in the case of mandatory contact tracing. The existence of these two major topics shows how important data collection is to contact tracing. In order to inspire confidence among people to voluntarily participate in contact tracing programs, it is essential to clearly communicate to them the data collection objectives at the very outset. Data Control Two major topics from our topic model related to control are safeguarding of data and state and federal tracking control. Within the safeguarding data topic, the privacy discussions mirrored data collection issues such that a majority of the users tweeted about data collection procedures and guidelines. The discussions also echoed a lack of data protections and security during the period of study. In times of crises, it is seen that data collection procedures as well as governments themselves are not fully transparent . A majority of the topics discussed online also pointed to the control of data as a major topic of interest, especially the level of control by local, state and federal institutions. The users prominently discussed the use of their personal data well after the pandemic ends. The emphasis of users on control sheds light on its importance for future surveillance and tracing programs. Since sharing personal information is always attached with a risk, people naturally like to have more control over what is done with their personal information . Therefore, it would be beneficial for policy makers to provide users with sufficient control over their data so that they can voluntarily and proactively participate in such programs in the future. --- Awareness of Privacy Practices The primary issue is that people do not want to share information online unless they are aware of the intended use of that information . We see users' privacy issues on Twitter, extracted from our topic model, that discuss topics like the introduction of newer surveillance technology and systems. Such new applications are released and advertised as using contact tracing to limit the spread of the virus. However, in the case of such healthcare apps, it is often seen that the data collection process, the actual personal information requested and the policies governing data usage are rarely stated . In this manner the majority of contact tracing apps that are released are doomed from the start and suffer from low adoption rates . Therefore, for policy makers it is very important to advertise the intended use of information and create awareness about the privacy protections for adopters of contact tracing programs. Figure 5 shows a combination of our results from Study 2, with the 6 major privacy topics, and the IUIPC framework to generate a word cloud based on interrelated topics. --- Research Findings In this paper, we have extracted privacy insights from social media discussions in the aftermath of a health crisis, COVID-19 pandemic. The findings from this paper conform with the Internet users' information privacy concerns framework proposed by Malhotra et al. . We segregated the major health privacy topics discussed by Twitter users into three issues. First, data privacy correlates with the first component of IUIPC, which is collection. Since the majority of discussions revolved around health data, its collection is naturally an issue that people discuss online. Second, privacy policies closely relate to control. As it has been shown by numerous studies, users like to understand the policies that control their data and govern its usage . Privacy policies exert effective control on data aggregators or collectors and prevent user data from being misused. Third, privacy violations align with the awareness of privacy practices' component. --- Theoretical Implications In terms of theoretical implications, we have outlined the need to consider user privacy and its sustained importance whence forming guidelines, designing protective measures, and establishing a response mechanism to counter the adverse privacy implications of pandemics. In this work, we explore the social sharing of health related information concerns through an analysis of over 270 million tweets. Using data driven exploration we uncover 9 different health privacy topics in Study 1 further distil them into 3 central privacy topics. Our data exploration approach contributes to enhancing privacy literacy and bridging theory and practice by incorporating discussions on digital privacy shared on social media platforms during crises events like the COVID-19 pandemic. During crisis, privacy might not be a central focus for the authorities, but from our analysis of Twitter conversations, it most certainly is an emotional issue for the community. Prior research has noted the importance of social sharing of emotions on Twitter and other similar platforms as such sharing serves as a form of interpersonal interaction which helps people to overcome their emotions . During times of crisis, privacy might not be a central focus for the authorities, but from our analysis of Twitter users, it most certainly is an emotional issue for the community. The right to privacy is even enshrined in the constitution, and users do not want to compromise it for a sure pandemic or not. Therefore, privacy during times of crises such as pandemics is an essential avenue for future research in the domain of user privacy. --- Practical Implications In terms of practical implications, official agencies can utilize the insights to focus on alleviating the privacy issues of individuals in the society and design better information systems and enforce stronger privacy policies. For ensuring the success of any technologies, the participation of the people is very important. It is then sensible to install measures that satisfy the basic tenets of confidentiality set forth in the right to privacy so as to ensure users' privacy is protected, and people are assured of the sanctity of their information. This research can also help to drive official campaigns that target the need for community participation in handling crisis situations. --- Policymaking Implications The privacy issues discussed on Twitter have implications for governments and policy makers, and addressing them sufficiently can help revitalize tracing programs. With the increase in vaccination efforts across the developed world and the discovery of new variants of the virus, contact tracing and surveillance have become a contentious issue . Also, the debate around the use of vaccination passports to enable safe travel across state and national boundaries has added to already existing privacy concerns of users . In this light, monitoring social media discussions are all the more important for deriving insights for policymaking to ensure success of such mechanisms. In addition, these privacy issues show the need for better of data protection policies and warrant the need to regulate the virtual space including online learning or remote work. There needs to be a stronger emphasis on regulating data collected during this crisis. Also, with respect to privacy violation issues it is imperative that the myths around contact tracing, surveillance and tracking are addressed. This would enable greater participation of the public in such tracing efforts provided their privacy issues are alleviated. --- Conclusion Using an LDA topic modeling approach we analyzed social media messages on Twitter and determined the most salient privacy topics that people are discussing during the COVID-19 pandemic. The topics of contact tracing and digital surveillance, which are related to user privacy and cybersecurity were also discussed. We also present the contribution from our work to the Bright ICT initiative and its importance in policymaking for ensuring user privacy preservation and cybersecurity. The vision of the Bright Internet can be used by governments and policy makers to develop solutions for global trust building so that users' privacy concerns are alleviated . Contact tracing and surveillance applications developed to reign in the pandemic can also be fortified with these Bright ICT initiatives so that there is an emphasis on preventive cybersecurity and proactive privacy preservation . During pandemic times, it is even more critical to ensure privacy is protected along with cybersecurity due to the increased reliance on the internet and virtual interactions. This paper utilizes Twitter data in a crisis in order to provide guidance on the cybersecurity and privacy concerns that are foremost in people's mind during a public health crisis. We plan to extend this work into a drawn-out investigation of the privacy needs of social media users. In our future efforts, we will also study the impact of privacy breaches on the population when their confidential data is used to drive a global response but without explicit user consent on data sharing. For other researchers in this domain, we present them with a few challenges regarding how to ensure privacy is maintained during times of a global emergency and how to sustain this privacy even when everything goes back to normal. With many news outlets, healthcare institutions and individual users on the Twitter, subtle variations in public sentiment can be observed on the platform . We aim to augment our data source in our future work and expand it to include other social media platforms as well. Our research, like any other research into information management systems, has its limitations. First and foremost, our approach focuses on privacy concerns related to health wherein the severity of data privacy concerns, as well as their prevalence, varies from country to country. In this study, we did not separate tweets originating from a specific country or target the privacy concerns of a specific country when collecting the data. Nevertheless, governments are addressing the issue of data privacy and working toward regulating social media platforms so that individuals' privacy is not at stake. A tweet message's source can be determined by multiple approaches, including hashtags, geolocation tags, and the presence of location in the tweet text. Identifying the location allows public bodies and governments to strengthen data privacy laws on social media platforms by tagging tweets with the origin country of the tweet. We plan to extend our research at a later point in time, considering the location-specific attributes in combination with health-privacy tweets. Second, our data collection does not distinguish between authentic and fraudulent tweets. During a pandemic, many social media users around the world try to influence other users by spreading false or misleading information about a specific event or situation, as well as creating unnecessarily tense situations in the general public. In such a situation, the ability to comprehend the widely discussed topic in conjunction with the authenticity of information allows one to mitigate the risks associated with misinformation. We encourage researchers conducting misinformation-related studies to consider privacy concerns alongside misinformation tweets when examining topic comparisons by misinformation. Also, future researchers can consider Communication Privacy Theory to study the social sharing of information, especially in the context of health privacy which creates tension within individuals and increases or decreases their risk of privacy leakages . On the one hand, social sharing of private health information can help to garner support to cope with health problems, On the other, people's privacy concerns may prevent them from seeking such much needed support. Finally, the focus of our research is textual information shared on the internet. This study does not address the issue of sharing personal patient records as an image file or in any other format other than text format in order to avoid violating patient privacy. awards and has taught in many countries in Asia. He was the recipient of the KSU Community Engagement Award in 2018 and has served on many advisory boards and councils including the Atlanta Regional Commission, Georgia Department of Revenue, Wellstar Institute for Better Health, American Diabetes Association and various health care task forces. H. Raghav Rao H. Raghav Rao is AT&T Chair Professor of Information Systems and Cybersecurity, Carlos AlvarezCollege of Business and a professor of computer science at the University ofTexas, San Antonio. He graduated from Purdue University. He was a distinguished visiting faculty atSwansea University in the summer of 2020 and 2021 and will be a Fulbright Nehru scholar at IIMBangalore in the summer of 2022 and 2023. --- --- Rohit
Online users frequently rely on social networking platforms to transmit public concerns and raise awareness about societal issues. With many government organizations actively employing social media data in recent times, the need for processing public concerns on social media has become a critical topic of interest across academic scholars and practitioners. However, the growing volume of social media data makes it difficult to process all the issues under a single umbrella, causing to overlook the main topic of interest within communication technologies, such as privacy. For example, during the COVID-19 pandemic, arguments on privacy and health issues exploded on Twitter, with several threads centered on contact tracking, health data gathering, and its usage by government agencies. To address the challenges of rising data volumes and to understand the importance of privacy concerns, particularly among users seeking greater privacy protection during this pandemic, we conduct a focused empirical analysis of user tweets about privacy. In this two-part research, our first study reveals three macro privacy issues of discussion distilled from the Twitter corpus, subsequently subdivided into 12 user privacy categories. The second study builds on the findings of the first study, focusing on the primary difficulties highlighted in the macro privacy subjects-contact tracing and digital surveillance. Using a document clustering approach, we present implications for the focal privacy topics that policymakers, agencies, and governments should consider for offering better privacy protections and help the community rebuild.
Background Two of the most distinctive features of overall mortality in Finland are that death rates increase in the southwest to northeast direction and that life expectancy of Finnish speakers is shorter than that of Swedish speakers [1]. Both these aspects conform to recent genetic mappings [2,3]. There are differences in the genetic architecture that increase in the southwest to northeast direction, and Swedish speakers in Finland have been found genetically closer to Swedes than to Finnish speakers. The variation owes to the country's settlement history. Finns are unique on the genetic map of Europe, because they were at one time a small and geographically isolated population. Being born in a high-mortality area in Finland is associated with a 10-30 per cent higher risk of dying from ischemic heart disease at high ages, as compared with being born in a low-mortality area [4]. A similar geographical pattern dominated by people's birth region has been observed for deaths from other common causes and in various age groups [5][6][7]. Hence, hereditary components might lie behind many deaths from cardiovascular diseases as well as external causes such as suicides and alcohol-related deaths. Many diseases, such as coronary heart disease, psychiatric disorders and alcoholism, are nowadays known to be associated with genetic susceptibility [8][9][10]. Taken together, these findings illustrate that, in the particular case of Finland, large-scale register data have the potential of shedding light on the question of how human genetic diversity manifests in mortality risks at the population level, even if they lack explicit genetic information and biomarkers. The country's settlement history consequently provides a rationale for interpreting the regional mortality differences as reflecting geographic clustering of hereditary factors. No explicit link between the mortality variation and genetic differences has yet been established, however. All previous studies on the effect of geographic ancestry on mortality risks in Finland have studied the influence of persons' own birthplace as compared to that of their current place of residence. That approach for reflecting geographic origin may be contaminated by the past decades' internal migration flows. The birthplace of a parent, on the other hand, is a substantially better indicator of geographic family origin, as it widens the time horizon and is not confounded by person-specific environmental or behavioural factors. This paper constitutes the first large-scale study of the Finnish regional mortality differences with focus on the influence of parental birth area. The opportunity was provided by recently available intergenerational data from longitudinal population registers. Assuming that geographic family origin reflects hereditary factors that influence mortality, we expected to find an effect of parental birth area on death risks irrespective of where the study persons were born or living as adults. Hence, even if people were born and raised in a low-mortality area, they would have an elevated death risk if a parent was born in a high-mortality area. --- Methods The data came from the longitudinal population registers of Statistics Finland and covered the period 1970-2003. The part used here consists of an eight per cent sample of all Finnish speakers, and an additional 50% sample of all Swedish speakers. The latter constitute a national minority of barely six per cent of the total population. Basic demographic and socioeconomic variables are available for every fifth year, based on the quinquennial population censuses. Deaths from all causes and emigration are known for each year. For all persons born after 1953, there is corresponding information for the parents. The structure implies that individuals could be observed at most up to the year when they become 50 years. Since there are few deaths at childhood, adolescence, and young adulthood, we started observing individuals from the year in which they became 30 years. The analyses consequently concerned ages 30-49 years, the period 1985-2003, and people born 1953-1970. Oneyear death risks were estimated with Cox regressions using age as the duration variable. Figure 1 illustrates the southwest to northeast increase in mortality rates standardised for age and calendar year, based on official aggregate statistics comprising the total male population by region for the period 1986-2005. The regions have been geographically numbered and coloured to facilitate comparisons. The thick broken line represents the most evident mortality difference, which roughly corresponds with the first national boundary between Sweden-Finland and Russia in 1323. A similar divide has been observed in terms of anthropology, folklore, and dialects [11]. In the data, there is unfortunately no information about the cause of death. However, from previous research we know that the regional mortality variation is dominated by mortality from cardiovascular diseases, alcohol-related causes and suicides [5], which also are the most common main causes of death in men aged 30-49 years . Mortality in same-aged women is outside the scope of this paper, as it is modest and dominated by various non-vascular diseases that display no evident regional pattern. To obtain enough statistical power for the analyses, a simplified regional categorisation was used. It distinguished two groups of Finnish speakers according to the east-west boundary mentioned above. For each region variable of interest -the person's area of residence , the person's birth area, mother's birth area and father's birth area -the same categorisation was applied. A separate category was applied for the Swedish speakers, independent of their own birth area or parental birth area, because most of them originate in western Finland. As much as 97% of all Swedish speakers live in the regions that are white-coloured on the map, and only two per cent in other parts of the western area. The remaining one per cent was excluded from analysis. We accounted for effects of some central personal characteristics in terms of each individual's birth year, educational level and family type at childhood . The latter was known because of the longitudinal structure of the data, meaning that all persons could be observed at the time when they were aged 10-14 years. All these variables are important mortality determinants in Finland [5][6][7]. There was information also about parental education and parental socioeconomic position. These variables were excluded from the models presented here, because they correlated strongly with the study persons' educational level, but had no impact on the estimates for the other variables. --- Results The unweighted data comprised 61531 persons, whereof 47434 were Finnish speakers and 14097 were Swedish speakers . The total number of deaths was 1464. The importance of internal migration on the population structure can be seen from the distribution of Finnish speakers on the region variables. Approximately 60% of the Finnish speakers were born in western Finland, but almost two thirds had at least one parent from eastern Finland. Even among those who were both born and residing in western Finland, the share with at least one parent born in eastern Finland was as high as 40% . Two thirds of the birth cohorts were living in western Finland at age 30 years. In a first model, we included persons' area of residence and the control variables. The results, which are summarised in Table 3 highlight some known facts. People residing in eastern Finland had 12% higher death risks than those residing in western Finland, whereas the death risk of Swedish Finland is equal to one. The classification is according to the 20 administrative regions, plus one category that separates the Helsinki metropolitan area. Authors' calculations based on [12]. speakers was 40% lower. In these ages, the ethnic-group mortality difference is the widest [6]. Also the control variables had substantial effects. Mortality risks decreased notably over educational levels and birth cohorts, whereas people raised in one-parent families had almost 40% higher death risks than those originating in two-parent households. The inclusion of these variables did not reduce the area or ethnic mortality difference, however. We proceeded by focusing on the influence of each area variable . The control variables were also included, but since the estimated effects were the same as reported above, they are not shown here. Replacing area of residence with own birth area or mother's birth area slightly improved the Wald statistic and increased the area difference marginally. Father's birth area had a stronger effect and improved the statistical fit relatively more. People with the father born in eastern Finland had 21% higher death risks than those with the father born in western Finland. When using either mother's birth area or father's birth area, the reference category is heterogeneous with respect to the study persons' geographic family origin, because the other parent may be born in eastern Finland. Simultaneously accounting for both parents' birth area revealed that the offspring death risk was 23% higher if at least one parent was born in eastern Finland, as compared with people whose both parents were born in western Finland. Having both parents from eastern Finland was associated with only a slightly higher mortality risk as compared with having only one parent from eastern Finland, however . The importance of parental birth area can also be illustrated by adding it into either model 1 or model 2. The effects of area of residence and own birth area then totally disappear , suggesting a marginal role of areaspecific current or early-life factors. Having a parent born in eastern Finland was still associated with more than 20% higher death risks as compared with having both parents born in western Finland. Another way to contrast the influence of geographic family origin against that of current and childhood environmental factors is to restrict the study group to people born and residing in western Finland. Doing so, we found that persons with at least one parent born in eastern Finland had 21% higher death risks than those whose both parents were born in western Finland . Hence, there was only a modest reduction in the effect of parental birth area as compared to that of model 5 in table 4. --- Discussion and conclusions Our results correspond with known facts about mortality of middle-aged men in Finland. The death risk of Finnish speakers in western Finland is approximately ten per cent lower than that of Finnish speakers in eastern Finland, but 40% higher than that of Swedish speakers. These mortality differences resemble genetic mappings of the population, but no explicit link has yet been established. As related to previous research based on population registers, which has documented mortality effects of people's own birth area and area of residence, we have here proceeded by using intergenerational data and focusing on parental birth area. We find that mortality differences by people's own birth area, which might proxy not only genetic factors but also early-life conditions, are fully explained by the parents' birth area. If at least one parent was born in eastern Finland, the death risk is over 20% higher as compared with if both parents were born in western Finland. A similar elevation is the case even if we restrict the study group to people born and residing in western Finland. Hence, geographic clustering of hereditary factors, as assumed reflected by parental birth region, seems to manifest in increased mortality risks. A limitation of the study is that we have no information about specific causes of death. However, we do know that in the ages studied, the dominating causes of death may, at least to some extent, be genetically related. It also needs to be stressed that, since we cannot trace any other ancestors than the parents, parental birth area as used here is most likely an underestimate of the true effect of geographic ancestry on mortality. Since internal migration in modern time has been directed primarily towards the western parts of the country, the current population in this area is genetically mixed. Many persons with both parents born in western Finland are therefore likely heterogeneous with respect to the birth area of second or higher order generations. Identification of family origin several generations back in time would accentuate any hereditable component predisposing to complex disorders [13]. An alternative explanation to the sizeable effect of parental birth area on offspring mortality would be learned patterns of behaviour. In that case, parents' poor diet and inadequate coping with risks in life would be transferred to the next generation in a patriarchal manner. The role of such social inheritance, as opposed to that of genetic factors, cannot, in our opinion, be large. It would imply that, even if the children were born, raised and living in a low-mortality area, they have embraced parents' supposed unhealthy behaviours. It also postulates that there would be some latent factor associated with the eastern Finnish way of life that is highly detrimental for health, and independent of whether it is the mother or the father that carries it. In families where one parent is from eastern Finland and the other from western Finland, it must also dominate any socially protective effects from the parent born in the low-mortality area. Various mappings of the Finnish population's health behaviours have been undertaken during the past decades. An overall conclusion based on these surveys is that dietary practices and culturally determined lifestyle factors do not underlie the regional mortality differences [14]. On the contrary, there is ample evidence about substantial genetic diversity across regions, and of susceptibility to specific diseases according to people's geographic roots [4]. During the past decade, the annual number of deaths in middle-aged men in eastern Finland has been approximately 700. As compared to same-aged Finnish-speaking men in western Finland, the excess mortality is more than 100 deaths per year. As the geographic mortality divide is strongly present also at higher ages [7][8][9], the total effect is even larger above the middle ages. At ages 50-74 years, for instance, the annual number of deaths by cardiovascular diseases, alcohol-related causes, and suicides in eastern Finland is almost 2000. This corresponds to an excess mortality of more than 300 deaths as compared to western Finland. From a public health perspective, many early deaths may consequently be avoided if genetic predisposition is recognised via close monitoring of persons' family origin. --- --- Competing interests The authors declare that they have no competing interests. --- Pre-publication history The pre-publication history for this paper can be accessed here: http://www.biomedcentral.
Background: Death rates are notably higher in eastern Finland than in western Finland, and life expectancy of Finnish speakers shorter than that of Swedish speakers. The mortality differences correspond to recent genetic mappings of the population and are prominent for causes of death that are known to be associated with genetic risk factors. Methods: Using intergenerational data, we studied the impact of parental birth area on all-cause mortality risks of middle-aged men in Finland 1985-2003, assuming that geographic family origin reflects genetic predisposition to complex disorders. Relative death risks at ages 30-49 years were estimated by parental birth region and ethnicity, according to Cox regressions standardised for own education, family type at childhood, and year of birth. Results: The death risk of Finnish speakers born in eastern Finland was 1.13 (95% confidence interval 1.01 to 1.26) that of Finnish speakers born in western Finland, whereas that of Swedish speakers was only 0.60 (0.52 to 0.71). In Finnish speakers, the effects of own birth area and area of residence disappeared when parental birth area was accounted for. The death risk of persons with at least one parent born in eastern Finland was 1.23 (1.09 to 1.39) that of people with both parents born in western Finland. Conclusions: Parental birth area is the driving force behind the regional mortality difference in Finland. The findings highlight and give further support for the potentially important role of genetic risk factors in mortality. Close monitoring of persons' geographic and ethnic ancestry may promote public health and avoid many early deaths.
Introduction Equity is one of the basic principles of Primary Health Care, and it is reflected in most countries' health policy [1]. Despite governments' commitment to promoting pro-poor health policies and interventions, levels of disparity in health status and utilization of basic health care interventions remain high throughout Sub-Saharan Africa [2]. Evidence suggests that in Sub-Saharan African countries, healthcare consumption is determined not by need, but by wealth, geographical location, education, and individuals' ability to pay [3]. Access to healthcare tends to follow the 'inverse care law, ' which supposes that the wealthy, who have a lower need for healthcare, have better access to quality care, while the poor and marginalized, who have a greater need, have limited access to quality care [4]. In South Africa, the impoverished have worse health than the wealthy [5]. Similarly, in Uganda, the poor are sicker and have less access to publicly funded health services than their wealthier counterparts [6]; and household welfare status has been highlighted as a critical predictor of health inequalities [7]. Inequalities, disparities, and inequities are commonly used interchangeably [8,9], although all refer to discrepancies in the utilization or access to services by various groups. Health disparities are differences in the use or access to healthcare services that are unnecessary, preventable, unfair, and unjust [10]. Equity in healthcare refers to ensuring that all individuals have access to a minimum standard of treatment based on need rather than any other factor, such as financial position, geographical location, or capacity to pay [10]. The aim of this study was to analyze equity trends in Uganda for several indices of maternal and child health and healthcare, utilizing data from the Uganda Demographic and Health Surveys of 2006, 2011, and 2016. Specifically, the study assessed the differences in absolute percentage changes in population averages between the wealthiest and poorest, rural and urban populations; calculated the quintile ratios and concentration indices to determine the magnitude and trend of inequalities and identified variables that displayed improving or worsening trends of inequality. Monitoring the levels and trends in health inequalities and health service utilization is critical for intervention programs that allocate finite public resources to people who are disadvantaged and have greater needs. The findings of this study may be used by other researchers in the design of future investigations. The findings can help policymakers and technocrats establish relevant health policies and initiatives that promote health equity. Ugandan communities might gain because subsequent policies and actions shall become more responsive to local needs. --- Statement of the problem In the previous few decades, Uganda has made significant progress in improving maternal and child health [11]. However, little is known about how this development has been distributed among different socioeconomic groups, and how health inequalities have changed over time. In Uganda, research on health disparities is scarce. The majority of studies on health inequalities have concentrated on a single health indicator, and none have examined trends in inequality. For instance, Robertson et al. [12] investigated urban-rural discrepancies in Chronic Obstructive Pulmonary Disease management and access in Uganda. Also, Ssewanyana & Kasirye [7] used data from Uganda demographic and health surveys to study the factors of child nutrition status in Uganda. Using data from three successive Demographic and Health Surveys from 2006, 2011, and 2016, this study assesses the degree and trends in disparities for a variety of indicators of maternal and child health and health care for varied socioeconomic categories, rural and urban populations. --- Methodology --- Study settings Uganda is a landlocked country in East Africa with a total land area of 241,559 square kilometers and a population of 44.3 million people [13]. Uganda is classified as a lowincome country by the World Bank, with a low human development index , ranking 159th out of 189 countries [13]. Up to 21.4% of the population lives in poverty, with less than US$ 1 per person per day [14]. Overall health expenditure per capita is $ 43, and total health expenditure accounts for 6.5% of GDP [15]. By the year 2019, infant mortality and under-five mortality were rated at 33 and 46 per 1000 live births respectively; and maternal mortality ratio was at 375 deaths per 100,000 live births [16]. --- Study variables The dependent variable in this study was Inequality levels; measured through quintile ratios and concentration indices. Quintile ratio provides information on the disparities between the wealthy and the poor [17]. It allows for comparisons of health status or health-care utilization between the richest and poorest quintiles. The Concentration Index on the other hand, is a relative measure of inequality that reveals how concentrated a health indicator is among the disadvantaged or advantaged [17]. It uses data from all five wealth quintiles to provide a complete picture by quantifying the degree of inequalities in the population. Explanatory variables were grouped into two categories: Maternal and child health variables, such as infant mortality rate, under-five mortality rate, and child underweight, Child stunting, prevalence of anemia, prevalence of fever, prevalence of Acute Respiratory tract Infections , prevalence of diarrhea; in children under five years of age, and Mother's low Body Mass Index . The other category includes variables of healthcare service use, such as antenatal care, skilled birth attendance, delivery in health facilities, full immunization coverage, medical treatment for child diarrhea, contraceptive prevalence rate, deliveries in government-owned health facilities, medical treatment for ARIs, medical treatment for fever in children under the age of five, and use of ITN. --- Sources of data and sampling procedures This study makes use of data from three Uganda Demographic and Health Surveys , which were conducted in 2006, 2011, and 2016 by a state specialized unit, Uganda Bureau of Statistics . The UDHS uses a stratified two-stage cluster sampling procedure. In the first stage, clusters are selected from sampling frames using the most recent census. Households are selected from each cluster at the second stage. The UDHS captures information in such areas as: women's and children's demographic and socioeconomic characteristics, household characteristics, maternal and child health status parameters, and maternal and child healthcare service parameters using questionnaires. It also involves conducting height and weight measurements of children and women, testing for anemia, malaria and Vitamin A deficiency [11,18,19]. Inclusion criteria: All women age 15-49 and who were either permanent residents of the selected households or visitors who stayed in the household the night before the survey were eligible to be interviewed. In one-third of the sampled households, all men age 15-54, including both usual residents and visitors who stayed in the household the night before the interview, were eligible for individual interviews. In the subsample of households selected for the male survey, anaemia testing was performed among eligible women age 15-49 and men age 15-54 who consented to being tested and among children age 6-59 months whose parents or guardians consented. In the same subsample, blood samples were collected from children age 6-59 months whose parents or guardians consented to malaria testing with rapid diagnostic test kits. Height and weight measurements were recorded for children age 0-59 months, women age 15-49, and men age 15-54. In 2006, there were 8,531 women and 2,503 men interviewed; in 2011, there were 8,674 women and 2,295 men interviewed; and in 2016, there were 18,506 women and 5,336 males interviewed. Up to 10,173 children under five years participated in the nutrition assessment exercise [11,18,19]. The surveys excluded households in institutional living arrangements such as army barracks, hospitals, police camps, and boarding schools [11,18,19]. --- Theoretical framework This study adopted a structural theory to understanding health inequalities [20]. The structural theory suggests that differences in social groups' socioeconomic circumstances, such as income, wealth, power, environment, and access, explain differences in health outcomes [21]. This argument is supported by evidence that health inequalities have decreased when structural inequalities have decreased [22] and that community health has improved when more resources have been provided [23], and, most convincingly, that the people with the most resources in any society are always the healthiest, regardless of their behaviors [24]. Even when a health issue is obviously linked to a genetic mutation, mortality disparities by socioeconomic class are large [25]. --- Measurement of variables Indicators analyzed are in two categories: Maternal and child health outcome indicators, such as infant mortality rate, under-five mortality rate, and child underweight, Child stunting, prevalence of anemia, prevalence of fever, prevalence of Acute Respiratory Tract Infections , prevalence of diarrhea; in children under five years of age, and Mother's low BMI. --- Height and weight measurement This study considered children with a Z-score less than minus two standard deviations from the median of the WHO reference population for height-for-age and weight-for-age [26; 27]. The UDHS collected data on children's nutritional status by measuring the height and weight of all children under the age of five in a subsample of one in every three families chosen for the survey. Weighing was done with a lightweight electronic SECA scale designed and built under the supervision of UNICEF. Shorr Productions designed a measuring board that was used to take height measurements. Children under the age of 24 months were measured laying down on the board, while older children were measured standing tall [19]. The nutritional status of children was determined using WHO's new growth guidelines published in 2006 [27]. --- Mother's BMI levels A BMI of 18.5 was utilized in this study to identify thinness or acute malnutrition in women aged 15 to 49 [28]. BMI is calculated by dividing one's weight in kilograms by one's height in meters squared . The body mass index is used to determine whether a person is lean or obese. The height and weight of women aged 15 to 49 were measured in one out of every three UDHS homes [18]. --- Anaemia screening In this study, anemia was defined as a haemoglobin level in children less than 11 g/dl [29]. Blood samples were collected for anaemia testing from eligible women and men who consented to be examined, as well as from all children aged 6-59 months who had permission from their parents or guardians. A drop of blood was taken from the prick site into a microcuvette, and haemoglobin analysis was performed on-site using a batterypowered portable HemoCue analyzer [19]. --- Malaria screening Malaria testing was only done on children aged 6 to 59 months; no adults were screened. A drop of blood was tested immediately using the SD Bioline Pf/Pv RDT, which is a qualitative test for the detection of histidinerich protein II antigen of Plasmodium falciparum and/or Plasmodium vivax in human whole blood, using the same finger prick used for anaemia testing [19]. Plasmodium falciparum is the most common Plasmodium species in Uganda. --- Data analysis Inequality was measured using two different methods: First, we considered quintile ratios. The ratio indicator compares health status or health-care utilization between the richest and poorest quintiles. To some extent, this indicator provides information on the disparities between the wealthy and the poor. However, it is based solely on data from the two wealthiest quintiles and ignores the remaining three quintiles between the top and bottom, and hence cannot provide a comprehensive picture of inequality over the entire population [30]. The second indicator is the Concentration Index; which is a relative measure of inequality that reveals how concentrated a health indicator is among the disadvantaged or advantaged [17; 30]. Its size represents the degree of inequality. The concentration index calculates the degree of economic inequality by utilizing data from all five quintiles. As a result, it is a synthesis of inequality throughout the entire population [17]. The concentration index has a range of -1 to + 1. Traditionally, if the health status measure is a "bad" in the sense that it depicts poor health, the index takes a negative value, suggesting that the poorest segments of the population bear the largest burden of poor health. If the health status measure is a "good, " in the sense that it indicates a positive feature of health, the index takes a positive value, suggesting that the poor are significantly less healthy. In the absence of inequities, the concentration index has a value of zero. The concentration index is calculated in a spreadsheet program from grouped data using the following formula [17]. --- C= + +… + Where Pt is the cumulative percent of the sample ranked by wealth status in group t, Lt is the corresponding Lorenz curve ordinate, and T is the total number of wealth groups, which is five in this analysis [17]. --- Results This section begins with demographic characteristics of participants, followed by findings on maternal and child health outcomes and ends with results on health-care utilization indicators. --- Demographic characteristics of participants A total of 5928 children between the ages of 12 and 23 months, 29,691 children under the age of five, 9642 women, and 9229 men between the ages of 15 and 49 were interviewed. A total of 31,769 live births documented in the five years preceding the surveys were considered. Table 1 holds details on the survey participants. --- Inequalities in maternal and Child Health status This sub-section presents population averages, quintile ratios and concentration indices for health outcome indicators for all wealth quintiles, rural and urban populations. Table 2, summaries the data. All indicators showed universal improvement across quintiles, and between rural and urban populations. The most success was made in lowering infant and under-five mortality. Between 2006 and 2016, the infant mortality rate fell from 76 to 43 deaths per 1,000 live births, and the under-five mortality rate fell from 137 to 64 deaths per 1,000 live births [11,18,19]. All other health status markers showed a similar pattern, as displayed in Table 2. --- Changes in absolute terms The poorest group improved more than the richest. For example, the lowest quintile's newborn mortality rate decreased by 45%, while the richest quintile's rate decreased by 38%. Similarly, stunting decreased by 11% points in the lowest quintile compared to 8% points in the richest quintile. However, the lowest quintile group improved less than the richest group in terms of anaemia and fever prevalence. Changes in other health status metrics are as shown in Fig. 1. Similarly, the rural population improved at a faster rate than the urban population. Under-five mortality, for example, fell by 85 deaths per 1000 live births in rural areas compared to 62 deaths per 1000 live births in urban areas. Stunting prevalence decreased by 9% points in rural areas but only by 2% points in urban areas. --- Quintile ratios Data analysis utilizing quintile ratios reveals that there is inequality between the poorest and richest quintiles. All of the variables have quintile ratios greater than one, showing the presence of inequalities that favor the wealthy over the poor. Furthermore, the quintile ratios rose with time in most indices, showing a growing inequality gap between the rich and the poor. The ratios of the lowest to highest quintiles, as well as rural to urban ratios, are shown in Table 2. The greatest ratios, and therefore bigger disparities, were reported in the under-five mortality rate, child stunting, underweight in children, prevalence of anaemia in children, prevalence of ARI, prevalence of fever, and mothers with low BMI. For example, the frequency of underweight in children among the poorest was 2.5 times greater in 2006 than among the wealthiest, and 3.4 times higher in 2016. A similar pattern may be seen for the prevalence of fever in children, the prevalence of ARI, the prevalence of anaemia in children, and the prevalence of child stunting. The prevalence of low BMI among mothers remained extraordinarily high, at 3.9 across the board. Except for infant mortality rate, all indices show dropping quintile ratios for rural vs. urban populations from 2006 to 2016. This finding depicts shrinking disparities between rural and urban populations. --- Concentration indices First, all of the concentration indices for health outcome indicators were negative, indicating that the poor are more afflicted by illness. Second, with the exception of the infant mortality rate and the incidence of diarrhea, all indicators showed increasing concentration indices. For example, the concentration index for childhood underweight grew from -0.07 to 2006 to -0.19 in 2016. Rising concentration indices suggest that inequality gaps are widening, against persons with low socioeconomic status. --- Inequalities in the utilization of maternal and Child Health Services At the population level, there has been a consistent and significant increase in all measures of service consumption, for all quintile groups, rural and urban populations. For example, the proportion of births attended by a skilled birth attendant increased from 42% to 2006 to 74% in 2016. Contraceptive prevalence increased from 18% to 2006 to 35% in 2016. Table 2 and. Figure 2 depict graphical representations of absolute changes for socioeconomic quintiles and rural vs. urban areas, respectively. All indicators of Maternal and Child Health Services utilisation showed universal improvement across quintiles, and between rural and urban populations. The most success was made in increasing the proportion of births attended by a skilled birth attendant, ITN usage, immunization coverage, and contraceptive use. For example, the proportion of births attended by a skilled birth attendant increased from 42% to 2006 to 74% in 2016. Contraceptive prevalence increased from 18% to 2006 to 35% in 2016. All other indicators showed a similar pattern, except proportion of Children under five years with fever that received medical treatment which reduced from 74.7 to 48.4% as displayed in Table 3. --- Changes in absolute terms For all variables, absolute gains are bigger among the lowest quintile than among the wealthiest, with the exception of ITN use among children under five years and fever and ARI treatment for children under five years, as displayed in Fig. 2. The increases in the poorest group for skilled birth attendants at delivery and facility deliveries are twice as large as the increases in the wealthiest group. On a similar note, the rural population experienced greater absolute increases than the urban population in all variables except for diarrhea and ARI treatment. The improvements in rural populations' usage rates for skilled birth attendants at delivery , facility deliveries, ITN use, and contraceptive use were at least twice as large as the changes in urban populations' usage rates. --- Quintile ratios Despite significant improvements in health-care utilization among the poorest households, socioeconomic inequities were discovered. This is demonstrated by quintile ratios greater than one, in Table 2. However, the ratios for all variables fell with time, indicating shrinking differences between the richest and poorest populations. The quintile ratio for facility deliveries, for example, declined from 2.8 to 2006 to 1.4 in 2016. A similar pattern can be seen for the contraceptive prevalence rate as well as all other measures. Despite significant improvements in rural health-care utilization, rural-urban disparities were discovered. This finding was supported by quintile ratios greater than one in the majority of the services, in Table 3. The high quintile ratios suggest that the urban population uses more services than the rural population. However, quintile ratios decreased with time, indicating that inequality was shrinking. The quintile ratio of health facility deliveries, for example, fell from 2.2 in 2006 to 1.3 in 2016. --- Concentration indices Except for diarrhoea treatment, all indicators exhibited positive concentration indices in 2006 and 2011, before changing to negative levels in 2016 as displayed in Table 3. This demonstrates a shift from a pro-rich inequality to a more equitable one . For example, facility birth indices fell from 0.20 in 2006 to 0.12 in 2011 to -0.72 in 2016. --- Discussion --- Variables showing widening trends of inequality The following indicators demonstrated worsening trends in socioeconomic and rural-urban disparities: Rate of under-five mortality ; Malnutrition in children under the age of five; Anaemia in children under the age of five; Acute Respiratory Tract Infection in children under the age of five; Fever prevalence in children under the age of five; and Mothers with a low Body Mass Index . These trends were evidenced by rising quintile ratios and concentration indices. Previous studies have linked Child mortality to economic inequality rather than epidemiological causes, with the disadvantaged poorer households registering higher mortality rates [31; 32]. Similarly, Wagstaff and Watanabe [33] identified that malnutrition inequalities affect the poor; and it diminishes consistently with growing living standards. Furthermore, Alaofè et al. [34] revealed a higher risk of anaemia in children from low socioeconomic backgrounds, Furthermore Sultana et al. [35] discovered that children from the poorest quintile were 2.36 times more likely to suffer from ARIs. In a similar vein, Filmer, [36] discovered that fever occurrences are frequently lower at the very top of the wealth distribution. Other studies established that maternal under-nutrition was highly related to socioeconomic characteristics; and concentrated among the rural population [37][38][39]. According to structural theory, the worsening trends in mother and child health can only be reversed if the factors of income disparity are addressed effectively. Previous research indicates that income has a positive impact on child health. For example, Lawson and Appleton [40], identified that doubling household income would dramatically reduce malnutrition and morbidity in preschool children by 20%. It was also discovered in Vietnam that fluctuations in stunting rates are partly explained by levels of income disparity, implying that income inequality is a primary driver of health inequities [41]. In addition to income, education programs have been proposed as an approach for improving maternal and child health outcomes [42]. Ssewanyana and Kasirye [7] suggest that raising primary school completion rates for mothers reduces Uganda's infant mortality rate; nonetheless, there is a need to enhance female education beyond the primary level if Uganda is to see meaningful changes in child health status. --- Variables showing narrowing trends of Inequality The following metrics showed improving trends in socio- Consistent with this study, Hosseinpoor et al. [43] identified a diminishing socioeconomic disparity trend in India's infant mortality rate, while Kumar and Singh [44] identified that rural areas had much greater infant mortality rates than metropolitan locations. In addition, Kengia [47] and Asamoah [48] concur that differences in skilled birth attendant utilization between socioeconomic classes and rural-urban groups had greatly narrowed. Barata et al. [50] identified that underprivileged children had higher vaccine coverage than those from the highest socioeconomic strata. Asamoah et al. [52] identified that there is growing equality in the use of modern contraceptives, and that the rural-urban split in modern contraceptive use has virtually evaporated. On the contrary, Kumi-Kyereme and Amo-Adjei [45,46] found that wealthy households were more likely than poorer ones to seek medical treatment for childhood diarrhea; and that rural poor had lower odds of reporting diarrhoea than affluent or urban inhabitants. Secondly, Chigwenah [51], show that higher socioeconomic status households are more likely than lower socioeconomic status families to have their children immunized. Janevic et al. [53] discovered, that women in poor communities were less likely than those in wealthier groups to utilize modern contraception. Dagne et al. [54], found that access to COPD therapy was greater in urban areas than in rural areas, and rural living was strongly related with acute respiratory infection. Hasan et al. [49] discovered that institutional delivery services favored the urbanbased and rich women. Furthermore, Hasan [55] found that wealthy households were more likely than poor Fig. 2 Absolute percentage point increases in health-care utilization between richest and poorest quintiles households to seek medical treatment for their children's fever; and Kanmiki et al. [56] revealed that the wealthy were more likely than the poor to own and utilize ITNs [56]. Overall, healthcare utilization metrics demonstrated decreasing disparities toward a perfect equality position; and a totally flawless equity situation was also observed in indicators linked to medical treatment for diarrhea, ARI symptoms, and fever in children under the age of five. According to structural theory, the achievements can be attributed to structural adjustments; the health sector reforms conducted by Uganda to make services more accessible, particularly to the poor and those living in rural regions [57]. Specific reforms include: Sector-Wide Approach processes [58]; abolishing user fees in government health units, [59]; improved systems in financing and supply of medicines [60]; Public-private partnership [61]; Decentralized service [62]; and Improved resource allocations to primary health care services [63], introduction of Poverty Action Fund to channel resources to high priority budget areas [63]. --- Conclusion In majority of the metrics studied, the results show a significant improvement in population averages. The rises are universal, ranging from the lowest to the wealthiest groups, as well as between rural and urban areas. However, significant socioeconomic and rural-urban disparities persist. Under-five mortality, malnutrition in children , the prevalence of anaemia in children, mothers' low BMI, and the prevalence of ARI in children were all found to have worsening trends of inequities. On the other hand, improving or lowering disparity levels toward a perfect equity stance were mostly identified in healthcare use indicators such as skilled birth attendants, facility delivery, contraceptive prevalence rate, child immunization, diarrhea treatment, and ITN use. Three healthcare use measures, namely medical treatment for diarrhea, medical treatment for ARI symptoms, and medical treatment for fever in children under the age of five, demonstrated a perfectly flawless equity situation. --- --- Abbreviations --- --- --- Competing interests The authors declare no competing interests. ---
Background Uganda has made great strides in improving maternal and child health. However, little is known about how this improvement has been distributed across different socioeconomic categories, and how the health inequalities have changed over time. This study analyses data from Demographic and Health Surveys (DHS) conducted in 2006, 2011, and 2016 in Uganda, to assess trends in inequality for a variety of mother and child health and health care indicators.The indicators studied are acknowledged as critical for monitoring and evaluating maternal and child health status. These include infant and child mortality, underweight status, stunting, and prevalence of diarrhea. Antenatal care, skilled birth attendance, delivery in health facilities, contraception prevalence, full immunization coverage, and medical treatment for child diarrhea and Acute Respiratory tract infections (ARI) are all health care indicators. Two metrics of inequity were used: the quintile ratio, which evaluates discrepancies between the wealthiest and poorest quintiles, and the concentration index, which utilizes data from all five quintiles.The study found extraordinary, universal improvement in population averages in most of the indices, ranging from the poorest to the wealthiest groups, between rural and urban areas. However, significant socioeconomic and rural-urban disparities persist. Under-five mortality, malnutrition in children (Stunting and Underweight), the prevalence of anaemia, mothers with low Body Mass Index (BMI), and the prevalence of ARI were found to have worsening inequities. Healthcare utilization measures such as skilled birth attendants, facility delivery, contraceptive prevalence rate, child immunization, and Insecticide Treated Mosquito Net (ITN) usage were found to be significantly lowering disparity levels towards a perfect equity stance. Three healthcare utilization indicators, namely medical treatment for diarrhea, medical treatment for ARI, and medical treatment for fever, demonstrated a perfect equitable situation.Increased use of health services among the poor and rural populations leads to improved health status and, as a result, the elimination of disparities between the poor and the wealthy, rural and urban people.
Introduction Continuous advances in women's rights and achievements have been taking place, however, significant inequalities between men and women persist in several sectors, including the labor market, education, and the political environment. These inequalities can manifest themselves through reduced opportunities, pay gaps for equal or similar work, limited access to educational and cultural resources, unequal distribution of domestic and family care work, and denial of fundamental rights [1][2][3][4]. Immigrant women experience additional challenges regarding gender inequalities due to the intersection with other issues, such as ethnicity, culture, religion, beliefs, and the economic and social norms of their countries of birth [5]. These women handle these different challenges while they must also adjust to the new environment, often away from their reliable and relevant studies. On 25 March 2023, a snowball literature search was conducted to locate other eligible studies for our investigation. This approach is analogous to the "snowball sampling" used in primary research. In our search, we started with the identified body of articles in the databases. Then, the reference lists of these articles were analyzed to find additional studies. This method can help discover studies that the database search may have missed. Ultimately, it aims to reduce selection bias and identify a larger number of relevant studies on a topic. After initial research and with the support of the Virtual Health Library platform, the search strategy included terms related to immigration, women, intervention, psychosocial well-being, and empowerment, in English, Portuguese, and Spanish languages. Given the nuances of these terms in the different languages, Table 1 presents the translation for each of them. The decision to choose English, Portuguese, and Spanish languages for the studies included was guided by some considerations. These languages are considered among the most spoken worldwide and are particularly prevalent in countries with high rates of immigration. This fact increases the probability of finding studies on the topic. In addition, our team is proficient in these languages, which allowed us to interpret and analyze the studies more precisely, without the risk of misinterpretation due to language barriers. The advanced search capabilities of the databases were utilized to ensure successful extraction of results. The keywords from the 3 languages were combined using search tools such as TS field , Boolean operators AND, OR, and the wildcard character * in both databases. Articles that did not fulfill the inclusion criteria, as well as review articles and unpublished studies, were removed from the results. To ensure the efficiency of the search strategy, a validation process was conducted, resulting in the identification of four relevant studies. Appendix C provides more information on this process. --- Criteria for Inclusion and Exclusion of Studies For the inclusion and exclusion criteria we employed the PICO strategy: Participants: The population was composed of immigrant women over 18 years old living in a foreign country. Studies conducted exclusively with immigrant women under 18 or over 70 years old, pregnant, or postpartum women, and individuals with intellectual or physical disabilities and refugees were excluded. Interventions: We included all interventions specifically designed to improve PWE. However, they were only included if they were clearly identified and protocolled. We classified interventions as "clearly identified" based on 2 criteria. The intervention had to be explicitly stated and described in the study. This includes defining the type of intervention . The intervention had to be specifically targeted to improve PWE. Studies where the intervention was not the primary focus, or the goal was not PWE were not included. Interventions that essentially addressed physical conditions, substance abuse, parenting, or gender/domestic violence were also excluded. We classified interventions as "protocolized" when the program was implemented based on a pre-established structure . The techniques used, duration, and frequency of the intervention were also to be presented. Therapies that did not have a defined plan were excluded from the study. Comparisons: Results had to present a comparison between the initial and final phases of the intervention through a quantitative design or a mixed design , if they evaluated the effectiveness of the intervention. Studies that did not present a comparison between the initial and final phases were excluded. Outcomes: Results had to promote the PWE of the participants. Studies contained measures and analyses that made it possible to verify significant improvement in the empowerment and psychosocial well-being in the population assisted. Interventions whose measures and analyses were not clearly reported were excluded. We classified "measures and analyses clearly reported" when the measures and analysis tools were described in a precise and understandable way, allowing the analysis of our study variable and the possibility of study replication. Studies that did not have at least one measure and data analysis tool clearly described were not included. --- Article Selection Process Data analysis was conducted using the Endnote Online. Results from databases were saved by title and abstract. Prior to assessing eligibility for inclusion, duplicate citations were removed and archived, first using the Endnote and then manually. Titles and abstracts were reviewed, and studies that were potentially relevant were included for full-text review. Full-text articles were reviewed. A PRISMA flow diagram was completed to describe the number of studies identified. A total of 3284 studies were initially retrieved. After removing duplicates using the Endnote and manual screening , the titles and abstracts of 2740 articles were assessed for eligibility based on the PICO criteria, and 2631 were excluded. The main reasons for exclusion were that the target population was not immigrants, women, or they were children, pregnant women, or refugees; or the interventions were aimed at treating physical conditions such as cancer , obesity, cardiovascular disease, diabetes, HIV, gynecological and obstetric issues, vaccination, parenting issues, or substance abuse. The remaining 109 articles were included for full-text analyses, and 60 were excluded. The reasons for exclusion at this stage were mainly because the population was mixed , or the intervention did not aim for empowerment or psychosocial well-being, or this was not validated. Finally, 36 studies appeared to meet the inclusion criteria, but 20 were excluded because they only had one final evaluation measure or scored very low in the assessment of the risk of bias or did not clearly report the results. A total of 16 studies were excluded because they were implemented in very specific populations, such as caregivers, farm workers, or survivors of domestic violence. Finally, thirteen publications were included in this review. We searched the reference lists of included articles but did not identify any additional articles that met the inclusion criteria. Figure 1 presents the process of selection and inclusion of studies in each phase. After the studies were selected, we extracted variables such as authors, year of publication, country of study, study design, sample cohort, intervention/program characteristics, data collection and analysis tools used, main results in the theme, and limitations. To prepare the data for synthesis, we categorized the collected variables in an Excel sheet and shared it among the authors. Table 2 presents a summary of the 13 included studies, including the N assigned to each study, author, year, country of study, study design, type of intervention and measures, study participants, and the effect of intervention on PWE. After the studies were selected, we extracted variables such as authors, year of publication, country of study, study design, sample cohort, intervention/program characteristics, data collection and analysis tools used, main results in the theme, and limitations. To prepare the data for synthesis, we categorized the collected variables in an Excel sheet and shared it among the authors. Table 2 presents a summary of the 13 included studies, including the N assigned to each study, author, year, country of study, study design, type of intervention and measures, study participants, and the effect of intervention on PWE. --- Descriptive Synthesis of the Studies 2.4.1. Design of Studies The studies were published between 2012 and 2021, conducted in the USA , Republic of Korea , and Spain . All studies had a pre/post intervention design , and three had a follow-up after two [44], four [34], and six [38] weeks. Only one study [44] was a randomized and controlled experiment with a double-blind process. Twelve studies were quasi-experiments, divided into experimental and control group [34,35,37,39,40,44,45], experimental group in two [41] or four cohorts [36], or only a pre/post intervention experimental group [33,38,42,43]. Most studies were non-randomized and/or non-equivalent . Only 3 were randomized [40,42,45]. --- Characteristics of Participants A total of 584 immigrant women were evaluated and 433 received some type of intervention for the improvement of their psychosocial well-being and/or empowerment. A total of 151 participated in control groups. Sample sizes of the studies ranged from 11 to 75 participants. Seven studies reported that participants should be over 18 years old, and in three studies, over 21 years old. Some of the main inclusion criteria were depression , being married to a Korean or being in an international marriage , or needing some type of public or financial assistance . Women were mostly born in countries in Latin America , Asia , Europe , and Morocco . --- Characteristics of Interventions Our data categorization resulted in 4 main components of the interventions: the study provided counseling in various aspects of life, such as relationships [35], promotion of physical, social, and mental health [36][37][38], migration journey [35,43]; health education/psychoeducation [33,35,[41][42][43]45]; cognitive therapies with cognitive reconstruction techniques [33,34,40,41,45]; and behavioral activation [41]. Expressive therapies such as logo-autobiography [34], sandplay therapy [39], and laughter therapy [44] were also implemented. Five studies were conducted through computer or telephone resources [36][37][38]41,42]. Activities developed in a group setting [33,40,43,44], individually [35][36][37][38]42], or both [34,39,41,45] were also mentioned. Studies had an average of 8 sessions, except for studies [36] and [37], which had a face-to-face session and sent text messages for 26 days. The shortest intervention was from [38], which consisted of one week of transmedia engagement via telephone or internet. The longest intervention was from [45], which implemented 12 sessions, every 15 days for 26 weeks. The program content was structured through sessions planned [33][34][35]39,42,43], overall content [36][37][38]41,44], or phases developed for interventions [36,37]. We also examined the language used in the implementation of the intervention, studies [33,39,45] did not provide information on the language in which the programs were conducted. Studies [34,35,41,43] reported that the programs were implemented in the native language of the participants. In [36], the program was implemented in the native language of most of the participants, but it is unclear whether all women spoke the language of the program. Studies [37,38,40,42,44] indicated that the programs were conducted in the language of the country, and that the target population was able to communicate in that language. In [44], if the participants did not speak the language, a translator was present to provide translation services. Appendix D provides a description of the interventions in each study. --- Instruments for Data Collection and Analysis The most used instruments for data collection were the Patient Health Questionnaire , followed by the Center for Epidemiologic Studies Depression , the Final Questionnaire on Text Messages , and the Perceived Stress Scale . Other tests were used only once . Descriptive analyses and sample identification were performed in all studies. The T-test was the most used test for data analyses , followed by ANOVA [33,34,40,44], Wilcoxon [33,36,39], Mann-Whitney U test [34,39], and Fisher's exact test [40,44]. Other analyses were performed only once . Semistructured interviews and qualitative analyses were conducted in 3 studies [41,42,45]. Only study [44] analyzed physiological data . [33] performed the most statistical analyses , while [37] performed the fewest . Appendix E provides a description of instruments for data collection and analysis in each study. --- Quality of Studies The risk of bias in the included studies was evaluated using the Joanna Briggs Institute Appraisal Checklist Tools [46]. The JBI Appraisal Checklist for Randomized Controlled Trials, consisting of 13 items was used for the randomized controlled trial . For non-randomized studies, the JBI Appraisal Checklist for Quasi-Experimental Studies, consisting of 9 items was used . In our investigation, only those studies that fulfilled over 50% of the established requirements were included. The choice of this cutoff by our team allowed us to find a balance between including the studies and ensuring an acceptable level of methodological quality and rigor in our analysis. Quasi-experimental studies had to meet 5 or more of the 9 criteria in the JBI Checklist for quasi-experimental studies. Experimental studies had to meet 7 or more of the 13 criteria in the JBI Checklist for experimental studies. Twelve studies were evaluated and met five [41], six [36,38], seven [33,35,37,42,43,45], eight [39], and nine [34,40] requirements of the criteria established by the quasi-experimental checklist . Study [44] was evaluated using the experimental checklist and met 10 of the 13 requirements . Table 3 shows the requirements for each study and their respective scores. [33] X X X o X X X # X NA NA NA NA [34] X X X X X X X X X NA NA NA NA [35] X X X X X X X # o NA NA NA NA [36] X X X o X X X # o NA NA NA NA [37] X X X X X X X # o NA NA NA NA [38] X X X o X X X # o NA NA NA NA [39] X X X X X X X X o NA NA NA NA [40] X X X X X X X X X NA NA NA NA [41] X X X o X X # # o NA NA NA NA [42] X X X o X X X # X NA NA NA NA [43] X X X o X X X o X NA NA NA NA [44] X X X # X # X X X X X # X [45] X X X X X X X # o NA NA NA NA Met requirement , didn't meet requirement , confused , not applicable . To evaluate the quality of the studies, we also assessed factors that could potentially interfere with the performance of the tests, such as the provision of payments in exchange for participation in the study. Our analysis revealed that four studies did not address this issue [39,40,43,45], while 3 studies explicitly stated that participation was entirely voluntary and no remuneration was provided [33,34,44]. Six studies offered some type of compensation, such as a gift or a gift card [35,38,41], expenses for phone and internet [36,37], or a financial compensation [42]. We also identified several limitations that may have impacted the reliability and validity of the findings. Some of the main limitations we identified were related to the sample size and/or representativeness [33,35,37,38,40,41,43,44], the possibility of response bias [34,38,[41][42][43][44], the lack of a control group [33,36,41,42], the study being conducted with convenience samples [33,41,43], language issues [34,40], and data collection being self-reported [40,42,43]. One study did not report limitations [39]. [45] only pointed out real-life economic constraints when implementing the program as a limitation. In seven studies, the risk of bias was unclear. Finally, we conducted a Grading of Recommendations Assessment, Development and Evaluation to assess the level of certainty related to the evidence and identify factors that could contribute to bias in the evidence. For this purpose, we defined a Likert scale ranging from 1 to 4 points, and the level of certainty of the evidence from each study was evaluated as high, moderate, low, or very low. Reasons for downgrading the evidence included limitations in study design, sample size and configuration, bias checklist score, quality of data collection and analysis, and reporting of results. Studies with very low quality were not included. Studies [33][34][35][36][37]40,42,43,45] were rated as moderate quality, while [38,39,41] were rated as low quality. Only study [44] was evaluated as high quality. --- Data Analyses to Access PWE Our analyses aimed to summarize the general effects of the implementation of the interventions on PWE and to verify the most suitable approaches for improving the PWE of immigrant women. To facilitate the identification of results, we defined 2 topics for each synthesis we would conduct. For the results of the interventions on the PWE of immigrant women, studies were categorized into: promotion of psychosocial wellbeing, promotion of empowerment of women, and promotion of both PWE. For the evaluation of the strongest interventions affecting PWE in immigrant women, we performed a score compilation of the best findings for: results in PWE, quality of studies, and descriptive synthesis of the studies. Using these codifications, we were able to identify the studies that met the eligibility criteria for each of our planned syntheses, as well as put them into the categories they best fit, creating a basis for our results. Due to the heterogeneity in study designs and outcome measures, conducting a metaanalysis was not possible. Instead, we conducted a descriptive synthesis to summarize the PWE findings of the included studies. The synthesis involved a convergent analysis of the quantitative data, combining and interpreting the results to derive meaningful insights. When statistical aggregation was not possible, results were presented in a narrative format. Our analysis also included a thematic synthesis of the included studies that used qualitative analyses as part of their methodology . Each qualitative result was reviewed, and the relevant data pertaining to our theme were extracted. Subsequently, these data were coded and grouped into themes for presentation. After the categorization and analyses, the results were presented in a descriptive format. The entire process of data collection, analysis, and risk of bias assessment was conducted in two stages: Stage 1 involved one reviewer who examined the studies and extracted the predefined variables. At Stage 2, a second reviewer verified the extracted data and supplemented them as necessary. Any discrepancies and uncertainties regarding the inclusion of a study, the data analysis process, or the bias categorization were resolved through discussion between the two reviewers . Whenever necessary, a third researcher and expert in the field was consulted for the final decision. --- Results --- Results of the Interventions on PWE of Immigrant Women In our research, we adopted a comprehensive understanding of psychosocial wellbeing, which encompasses various aspects such as mental health balance, quality of life, and social interactions. Empowerment refers to the dynamic process in which individuals or groups achieve and maintain autonomy, independence, and social participation. This implies, for example, being able to manage their own lives and make their own decisions. In this topic, we evaluated the effects of the interventions on these components across studies with experimental groups and studies with experimental and control groups. --- Results of Experimental Studies on PWE of Immigrant Women For studies conducted with only experimental groups, the main results on psychosocial well-being are observed through a significant difference post-intervention in the improvement of mood and depression levels [36,38,41,43]. There were also significant and positive differences in reducing stress [33,42,43], anxiety [38], and in post-traumatic stress [41]. In the evaluation of empowerment components, significant improvements were observed in increased self-esteem [33], self-efficacy, general empowerment, and safety-related empowerment [42], active coping, positive reframing, self-distraction, and planning [43]. In [43], these results were significantly associated with reduced stress and depressive symptoms. However, Ref. [33] did not show any significant improvements in sense of coherence and mental quality of life. In [36], only statistical differences occurred for experimental groups that showed moderate or high depression levels in the initial evaluation phase. In [38], the follow-up after 6 weeks did not show significant results. Three studies that evaluated variables related to social support did not present significant results after the intervention [33,41,43]. However, in [41], the qualitative analysis showed an improvement in the perception of social support. Except for [38,41], all these studies were rated with moderate quality in the GRADE evaluation and scored between five and seven points on the JBI Checklist for risk of bias for quasi-experimental studies. --- Results of Experimental and Control Studies on PWE of Immigrant Women Studies conducted with experimental and control groups showed significant differences after the intervention, with the experimental group scoring better in almost all variables. In terms of psychosocial well-being, there were improvements in mood and depression levels [34,35,37,40,44,45], anxiety [39,44], stress [45], acculturative stress [35,44], general health [35], loneliness [35,39], and a decrease in salivary cortisol [44]. Regarding the empowerment components, significant improvements were observed in health literacy [35], self-esteem [40], and life purpose [34]. In [34], these scores were maintained at both post-test and 4-week follow-up. However, there were no significant differences between the control and experimental groups in [39] scores, the overall effects of social problem solving [40], and salivary IgA [44]. Qualitative analyses revealed perceived improvements in loneliness, cognitive reconstruction, and financial assets. Except for [39], which rated as low quality, and [44], which rated as high quality, all of these studies were rated as moderate quality in the GRADE evaluation and scored between seven and nine points on the JBI Checklist for risk of bias for quasi-experimental studies. Ref. [44] scored 10 out of 13 points for the JBI checklist for experimental studies. --- Strongest Interventions to PWE in Immigrant Women Based on our findings, we assessed which interventions seemed to be the most effective for promoting PWE in immigrant women. We identified the techniques and approaches used in the included studies and selected those that had the strongest evidence base. The two interventions highlighted for their effectiveness and quality were psychoeducation and cognitive restructuring techniques. Psychoeducation was implemented for different topics in six of the 13 included studies [33,35,[41][42][43]45]. In [33,35,45], topics such as acculturative stress, stress management, satisfactory relationships with husband, children and husband's family, mental health literacy, and utilization of mental health services were addressed. Ref. [42] provided individual feedback based on identified strengths and offered educational modules and sessions for stress reduction. In [41], psychoeducation was used as part of the content included in the behavioral activation program. In [43], sessions were provided related to the migration journey, adjustment to a new location, mental health, and social and family issues. These interventions were significantly effective in improving psychosocial wellbeing related to improvement of mood and depression levels, general health, in reducing stress, acculturative stress, post-traumatic stress, and loneliness. For the empowerment components, the benefits were related to increased self-esteem, self-efficacy, health literacy, general empowerment, safety-related empowerment, active coping, positive reframing, self-distraction, and planning. Except for [41], all of these studies were rated moderate in quality in the GRADE evaluation and scored seven on the JBI Checklist for risk of bias for quasi-experimental studies. Cognitive restructuring techniques were used in five of the 13 studies [33,34,40,41,45]. Refs. [33,34] implemented sessions that involved producing a personal timeline, exploring relationships before and after migration, and exploring personal crises and attitudes toward those crises. Ref. [40] focused on cognitive reconstruction to promote a positive self-image, and develop personal strengths as well as problem solving skills. Ref. [41] adopted behavioral activation for the identification of problem behaviors and idleness and implemented interventions to increase activity and participation in pleasurable activities. Ref. [45], in turn, focused on developing psychological skills through cognitive strategies to identify symptoms of tension and their associated thoughts and feelings, in addition to strengthening social networks and building friendships. These interventions were significantly effective in improving psychosocial well-being in terms of reducing mood and depression levels, in reducing stress and post-traumatic stress, and loneliness. For the empowerment components, the benefits were related to increased self-esteem and life purpose. Furthermore, Ref. [34] implemented this technique and demonstrated better results on PWE measurements at the 4-week follow-up. Except for [41], all of these studies were rated with moderate quality in the GRADE evaluation and scored between seven and nine points on the JBI Checklist for risk of bias for quasi-experimental studies. Nonetheless, although the qualitative analysis of [41] revealed an improvement in perceived social support, the studies that used psychoeducation and/or cognitive restructuring techniques for support issues and social problems [33,41,43] did not find significant quantitative results. --- Discussion --- Effects of Interventions on PWE of Immigrant Women All studies included in the review reported significant improvements in different aspects of psychosocial well-being. Immigrant women who participated in interventions showed improvements in mood and overall health, reduction of symptoms of depression, stress, acculturative stress, anxiety, PTSD, and loneliness. These effects were generally maintained when compared with the experimental and control groups, with a few exceptions. These findings are consistent with other SLRs that investigated interventions to improve the psychosocial well-being of immigrant people using psychosocial variables such as reduction of stress, depression, anxiety, suicidal ideation, and PTSD [47][48][49][50]. Furthermore, the therapies used in these studies were consistent with those that we found in our SLR, such as cognitive-behavioral techniques [47][48][49][50], counseling [49], psychoeducation [49,50], art therapy [49,50], mindfulness and relaxation [48,49], and group interpersonal theory [48,49]. In terms of the empowerment components, some interventions [33][34][35]40,42,43] that included counseling, health education/psychoeducation, and expressive and cognitive therapies delivered in groups and/or individually, showed positive effects in promoting immigrant women's empowerment. These results are presented through an increase in self-esteem, self-efficacy, general and safety-related empowerment, health literacy, and life purpose. In [43], psychoeducation and counseling resulted in significant improvements in active coping, positive reframing, self-distraction, and planning, which were significantly associated with reduced depressive symptoms. Improvements in self-esteem and selfefficacy can help immigrant women to feel more confident in their abilities and more prepared to face new challenges with positivity [51,52]. In addition, improved social problem-solving skills can help women to identify and handle problems and challenges that they may encounter through the immigration process [51]. Improvements in general and safety-related empowerment can increase women's sense of control and security in their lives [51,53]. These findings suggest that the interventions used in the included studies can lead to positive changes in the perception that individuals have of themselves and in their ability to cope with challenges in order to find a direction and a sense of purpose in their lives, a key component of women's empowerment [23,25], especially for those who are most vulnerable [54]. However, some studies did not find any significant results. Some reported improvements only in qualitative outcomes or found no significant differences between the experimental and control groups at pre-post-intervention or follow-up assessments. This variability can be attributed to several reasons, including differences in the quality of the interventions used, the samples studied, study designs, and outcome measures and analyses [55,56]. Additionally, three studies that assessed social support did not report significant post-intervention outcomes. Social support is a complex phenomenon and involves several stakeholders, such as community, family, friends, professionals, and others [57,58]. Therefore, preventing these variables from affecting the results becomes challenging. --- Effectiveness of Psychoeducational and Cognitive Restructuring Interventions to PWE of Immigrant Women We support psychoeducation and cognitive restructuring as the strongest techniques for promoting PWE in immigrant women based on their effectiveness in the included studies, as well as their methodological quality and beyond. Psychoeducation interventions sought to provide knowledge, skills, and resources to improve immigrant women's adaptation and well-being. Cognitive restructuring techniques were employed to help immigrant women challenge and change negative thought patterns, promoting a healthier and more adaptive perspective on themselves and their circumstances. Both interventions are accessible and easy to implement, which makes them appropriate for use in clinical and community settings. In addition, both are techniques that maintain an objectivity and standardization in their components, which allows for easier measurement, facilitating the evaluation of their effects on outcomes. Both approaches have demonstrated positive results in interventions for migrant and refugee people and their families in different contexts, such as: health treatment [59], reproductive health and mental health [60,61], detention [62], or undocumented [60] and empowerment for migrant groups [63,64]. In addition, we consulted the manual on supporting intervention for migrant women in reception centers [65] and the guide for psychological intervention with immigrants and refugees [66], which support as a main part of programs for intervention components based on techniques encompassing psychoeducation and cognitive restructuring. Finally, both approaches have found long-lasting effects in the PWE of different populations [67][68][69][70][71]. However, it is important to mention that none of the studies that evaluated questions about support and social problems did not have any significant results and this should be taken into consideration. This is important because the manual and the guidelines referred to the need to include the social context and the development of social skills [66]. Moreover, it is important to note that other methods and approaches were used in the studies included in this SLR, and their effects may be relevant for different populations and contexts. Consequently, the choice of interventions needs to consider the specific characteristics of immigrant women and their individual and collective needs. The toolkit "integrating migration into health interventions", by the International Organization for Migration, highlights the importance of promoting the inclusion of migrants of all genders in multisectoral coordination mechanisms and national health bodies. This involves supporting participation in the development of action plans for migrant health and ensuring evaluation of the implementation of these plans [72]. This is relevant to promote actions that really relate to the needs of the target population. Finally, there are also barriers specific to the immigrant population that impede the implementation of health care interventions, such as language barriers, belief systems, personality, stigma, discrimination, and others [66,72,73], that need to be considered. --- Limitations and Future Directions This review highlighted the lack of quality of several studies [74][75][76][77][78]. There was only one randomized controlled trial, which is a more consistent design to include in the RSL and enable meta-analyses, resulting in more reliable outcomes. Furthermore, the methodological quality was low or moderate for most of the included studies, as was the presence of possible selection and confounding biases [76]. Additionally, the heterogeneity in the methods and results of the included studies made it impossible to perform a meta-analysis, restricting the synthesis of results to a descriptive and qualitative interpretation [77]. The presence of single-arm studies was a limitation in terms of interpreting the possible causal inference of the results. Furthermore, the limited availability of studies on specific interventions to improve PWE in immigrant women may have contributed to the limited number of studies included in this review. These limitations make the generalization of our results to other populations and contexts difficult [74]. To address these limitations, future studies should use more randomized controlled trials with a high methodological quality to confirm the findings and establish a strong evidence base for effective interventions. In addition, efforts should be made to standardize data collection and analysis methods to improve comparability and meta-analysis of study results. Moreover, efforts to increase the number of studies on specific interventions to improve PWE in immigrant women should be made [74][75][76][77][78]. The sample size and geographic distribution of the studies included also present some limitations. In some studies, the sample size was very small . In addition, the total sample size of evaluated immigrant women was only 585, and 454 received some type of intervention. This is a common limitation in research with specific populations, such as immigrant women, and may affect the generalizability of the results. Small sample sizes can also increase the risk of type II errors, where a true effect is not statistically detected even if it exists in the sample. Regarding geographical issues, the studies were conducted only in the United States, Republic of Korea, and Spain and the participants were born in Latin America, Asia, Europe, and Morocco. These limitations may have affected the generalizability of the results to other populations and contexts, as the results may have been influenced by specific characteristics of each country, the small sample size, or cultural, linguistic, and contextual factors that can vary among different populations. Another limitation is related to the language used in the implementation of the interventions. In nine studies, there may have been problems regarding the participants' ability to understand the intervention. This is either because the program was implemented in the language of the country , or because the studies did not fully or partially address the language in which the program was implemented. Finally, the criteria for inclusion and exclusion of participants varied across studies, and the characteristics and needs of the participants were not homogeneous. Furthermore, the allocation of the intervention and control groups in several cases was done by convenience and in a non-equivalent format, which might have affected the individual outcomes of the participants [55,56,74]. For future research, it is essential to conduct studies with larger and more representative samples, including immigrant women from different backgrounds and at different stages of their migration trajectories. In addition, it is recommended to address the language of the intervention more comprehensively, ensuring cultural and linguistic adaptation, as well as the availability of translation services whenever needed. It is also important to establish clear criteria for inclusion and exclusion of participants and to enable the homogeneity of samples. The use of randomized and equivalent allocation methods between intervention and control groups is also recommended. The inclusion of interventions that address the specific needs of immigrant women in different cultural and social contexts would be noteworthy. Finally, follow-up and longitudinal studies need to be implemented to ensure that the benefits gained are maintained in the long term [74][75][76][77][78]. In addition to these limitations, the present SLR also presented some limitations regarding the inclusion or exclusion of studies that should be considered when interpreting the results. In this sense, there were possible sources of bias in our research. The restriction of the selection of publications to English, Spanish, and Portuguese languages was a limitation, which may have restricted the inclusion of relevant studies. Similarly, the use of Scopus and Web of Science databases for data collection may have ignored studies indexed in other databases. In addition, gray literature or unpublished studies were not considered, which could have contributed to a more comprehensive review. In addition, even though we adopted clear inclusion and exclusion criteria, it is possible that we excluded relevant studies due to limitations in our search strategy or interpretation of the criteria. Another limitation relates to the complex and subjective construct of psychosocial well-being and empowerment, which made objective and comparable assessments across different studies more difficult. Despite efforts to make an unbiased selection, our interpretation of these concepts may have influenced the results of the review. To address these limitations, future studies should consider adopting a more inclusive approach to language and publication sources, including studies in additional widely spoken languages such as Chinese, Hindi, Arabic, and Bengali. Furthermore, it would be beneficial to expand the search to include other databases, like PubMed and PsycINFO, as well as considering studies from the gray literature. In terms of inclusion and exclusion criteria, future studies would benefit from enhancing the search strategy and criteria to avoid excluding relevant studies. This can be achieved through a more comprehensive literature review, adjusting selection criteria, involving additional reviewers, conducting sensitivity analyses, and being transparent about the limitations. Additionally, to address the subjective and complex nature of PWE, researchers may consider using specific and standardized assessments or including specific variables as inclusion criteria that align with the PWE construct [74][75][76][77][78]. This approach can contribute to a more comprehensive understanding of the topic and help to mitigate the limitations associated with bias and the exclusion of relevant studies. --- Originality and Implications As far as we know, this is the first SLR that sought to evaluate the effects of interventions for PWE in immigrant women. Our review offers an innovative contribution by providing insights into four types of interventions that have demonstrated efficacy in improving the psychological well-being of immigrant women. The results of the included studies showed significant improvements in various areas such as mood levels, depression, anxiety, stress, post-traumatic trauma, self-esteem, empowerment, and active coping skills. These findings are particularly innovative as they provide a comprehensive and holistic understanding of the effects of interventions on the psychological well-being of immigrant women, enabling the development of more comprehensive and effective interventions. Furthermore, our findings may also contribute to the field, as we provide insights into effective and appropriate interventions for this population. Through the analysis of the included studies, we found that interventions based on psychoeducation and cognitive restructuring techniques stood out as the most effective. These innovative findings can contribute to the establishment of a solid evidence base that strengthens the clinical practice of health professionals and facilitates the development of future interventions. As these two approaches are structured and easy to implement, they can be incorporated into specific mental health and well-being programs and policies for this population, leading to positive and impactful outcomes. Finally, our review identified gaps in the literature, which can highlight areas that require further investigation and guide future studies. The diversity of study designs and interventions highlighted in our review also emphasizes the importance of tailored approaches to address the individual needs of immigrant women. Each woman brings a unique migration experience and faces specific challenges in her adaptation process. Therefore, interventions that consider different cultural, linguistic, contextual, and socioeconomic experiences are essential to effectively address psychological well-being issues in this population. This information can guide future research, promoting a greater understanding of the most effective and appropriate interventions to improve the PWE of immigrant women and, consequently, contribute to the development of more inclusive and sensitive policies and practices tailored to their needs. --- Conclusions This SLR has provided promising evidence regarding the effectiveness of interventions aimed at improving PWE in immigrant women, despite variations in the results across studies. The experimental groups scored better in almost all variables after the interventions, even in comparison with the control group. The review also highlighted the limitations of the included studies, such as the lack of high-quality research, risk of bias, heterogeneity of methods and results, sample, and geographic locations. To address these limitations, interventions should be culturally sensitive and tailored to the specific needs of immigrant women. Furthermore, larger sample sizes and randomized controlled trials are necessary to establish the effectiveness of these interventions. These findings have important implications for health professionals and decision makers, providing guidelines for future interventions and informing health policies to consider the cultural and socioeconomic contexts of immigrant women. Finally, continued investment in research and interventions to promote PWE in immigrant women can lead to improved health and psychosocial well-being and enhance their engagement and empowerment in their new communities. --- SELECTION --- RESULTS --- Study Selection 16a Describe the results of the search and selection process, from the number of records identified in the search to the number of studies included in the review, ideally using a flow diagram. --- 163-199 --- Synthesis of Results 16b Cite studies that might appear to meet the inclusion criteria, but which were excluded, and explain why they were excluded. --- 174-179 --- Study Characteristics 17 Cite each included study and present its characteristics. --- Appendix C. Search Strategy in the Databases This appendix outlines the search strategy used to retrieve relevant studies in the databases for our systematic review. The strategy was developed for the Web of Science and Scopus databases, in the English, Portuguese, and Spanish languages. Additionally, some common criteria for both databases are presented. and title-abs-key and title-abs-key and title-abs-key ) --- Database Portuguese and title-abs-key and title-abs-key and title-abs-key ) Spanish and title-abs-key and title-abs-key and title-abs-key [36] CONTENTS Native language of most of the participants.For the others, it is not stated. N Contents included a message bank focused in: strengthening of positive thinking, capacity for reflection, improvement of health, promotion of physical activity, capacity for planning and organization of tasks, and improvement of social relations. [37] CONTENTS Language of the country.The participants were able to communicate in that language. Contents included a message bank focused on: thinking, health, physical activity, and social relationships. The messages inquired, advised, and guided regarding daily life habits to develop positive and healthy behaviors as opposed to the negative. --- N Type of Plan --- Language of the Program Description of Intervention Plan [38] CONTENTS Language of the country.The participants were able to communicate in that language. Contents included photos, captions, and links to all videos and the resource-rich blog, including contact information and links to local and web-based resources, as well as hotlines to mental health services. [39] SESSIONS Does not address. All sessions included each participant selecting five photos, doing a sandbox scene in silence, and recounting the emotions, physical sensations, memories, and ideas they felt while doing the sandbox scene. Then, two participants were put in pairs and one of them did a sand scene while the other became an observer of the work and reported back to the group. In the end everyone shared with the group. [40] PHASES Language of the country.The participants were able to communicate in that language. [41] CONTENTS Native language of the participants. The content included behavioral activation , a component of CBT for depression and PTSD. BA seeks to find problem behaviors and idleness and implements programs to help individuals become more active in their natural environment by connecting them to sources of reinforcement. It includes monitoring and evaluation of the enjoyment gained from participation in activities. Gradual attributions to involvement in enjoyable activities. Cognitive testing of programmed activities for possible obstacles. [42] SESSIONS Language of the country.The participants were able to communicate in that language. SESSION 1: Individual strengths-based telephone feedback based on survey responses and initial assessment. SUBSEQUENT SESSIONS: Self-directed online educational/psychoeducational modules and stress-reduction phone sessions facilitated by the research team. They addressed topics such as sexual-reproductive health, healthy relationships, immigration, HIV/STDs, career planning and financial management, family planning, and information on immigration visas or local service providers. [43] SESSIONS Native language of the participants. FIRST FIVE SESSIONS: Migration Journey; Life in NC and You: Ways of Adjusting to a New Place; Mental health; Helping Others as a Promoter; and Life in NC and Family: Difficulties Adjusting to a New Location. FINAL SESSION: Included a graduation event with family and peers. [44] SESSIONS Language of the country.The participants were able to communicate in that language. There was a translator if necessary. Contents included various activities along with simulated laughter such as clapping, singing, dancing, and playing. --- N --- Data Availability Statement: To request the dataset extracted for this SLR, send an email to Patricia Silva at [email protected]. The data will be provided for academic or research purposes, and only if the ethics and privacy policies of both the institution and the research project are respected. --- Author Contributions: Conceptualization, P.S. and H.P.; methodology, P.S.; software, P.S.; validation, H.P.; formal analysis, P.S.; investigation, P.S.; data curation, P.S.; writing-original draft preparation, P.S.; review and editing, H.P.; supervision, H.P.; project administration, P.S.; funding acquisition, P.S. All authors have read and agreed to the published version of the manuscript. Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. --- --- Appendix A. Checklist PRISMA 2020 for Abstracts This appendix provides the checklist for reporting systematic reviews and metaanalyses in abstracts following the PRISMA 2020 guidelines. The checklist includes essential information that should be included in the abstract to ensure transparency and completeness in reporting. --- Appendix B. Checklist PRISMA for Systematic Review Appendix B provides the checklist for reporting a systematic review according to the PRISMA 2020 guidelines. It includes essential items to ensure the transparency and integrity of the SLR, such as title, abstract, introduction, methods, results, discussion, and other topics such as protocol registration, funding, conflicts of interest, and data availability. The second column shows the lines in which each topic can be found in our text. --- Appendix D. Summary Table with Description of the Studies' Interventions Plan Appendix D presents a summary that provides information about the intervention plan adopted in the studies included in the systematic review. The table contains details about the type of intervention plan, the program language used, and a brief description of the intervention plan in each study. In our SLR the studies were constructed based on sessions, contents, or implementation phases. --- Appendix E. Summary of Data Collection and Analysis Instruments of the Studies In this appendix, we present a summary of the data collection and analysis instruments used by the studies that were included in the systematic review. The data collection instruments included structured questionnaires, semi-structured interviews, and physiological analyses. The data analysis uses quantitative and qualitative methods. --- N Data Collection Data Analysis [33] Quantitative: Sense of coherence (SOC-
This systematic review (SLR), based on the PRISMA 2020 guidelines, aims to present a current overview of interventions aimed at promoting the psychosocial well-being and/or empowerment (PWE) of immigrant women in order to guide future projects. Data collection was performed in the SCOPUS and Web of Science databases, with studies published between 2012 and 20 March 2023 in English, Portuguese, and Spanish. Inclusion and exclusion criteria were based on the PICO guidelines: (P) immigrant women, (I) interventions to improve PWE, (C) comparison between the initial and final phases, and (O) evaluated results for PWE. Risk of bias was assessed, and most of the studies met more than 80% of the JBI bias criteria and had moderate quality on GRADE. Thirteen studies with 585 participants were included, mostly non-randomized, non-equivalent, and with an experimental-control group design. The main components of interventions were health education/psychoeducation, counseling, cognitive restructuring, and expressive therapies. A descriptive synthesis of qualitative and quantitative data was made to evaluate the results of the interventions in PWE. In the experimental studies, results assessed improvements mainly in mood and depression levels, and stress reduction. Empowerment components were less covered. Experimental groups performed better in almost all variables in the comparison with control groups. The strongest interventions were psychoeducation and cognitive restructuring techniques. The main limitations of the studies were the lack of quality of several studies, sample size and representativeness, language, and the possibility of response bias. Even taking this into account, this article makes an original contribution by advocating for evidence-based practice and offering significant implications for health professionals, policy makers, and researchers that work with the integrative health of immigrant women. This SLR is registered in PROPESRO Registration: CRD42023399683. PS is a research fellow of the Foundation for Science and Technology (FCT) of Portugal.
Introduction Pedophilia is defined as the ones reflection of sexual arouses, urges, thoughts or fantasies persistently in prepubescent children. The expression of such individual also revealed lack of sexual interest in adults . According to pedophilia is the offending feature or the forcing sexual offense directed to the children of less than 13 years . Mohr et al. defined Pedophilia as the psychological disorder in which an older or adult individual commit to fulfil ones sexual desires from children of under thirteen years of age. The age bracket given by the sociology and criminology reports is that pedophile majorly targeted the child is greater than 5 years of age and less than 1 years of age. The pedophilia is rare disorder among women than men. The sexual act includes the touching, looking, kissing and intercourse with every young child who is very much younger from the pedophile . According to the national survey in the United States, one in twelve children of year 2 to 17 years used to became the victim of pedophilia . According to a report female populations are more sexually abused and nearly 10% male population of young children became the victim of the men's lust. Moreover, 20% female of the international survey report are abused by their relatives or by someone known to the child . Females too prefer prepubescent boys than post-pubertal boys because post-pubertal boys has less interest in typically sexually involved women of his age or older . The male range of pedophilia is one to five percent among children sexual abuse cases. Women are too pedophiles however their percentage is so small and usually they are unnoticed among society. According to the study, around 5% of the global population is pedophile. Female prevalence rate for pedophilia is still particularly unreported . Studies also reported that women pedophiles are thought to be emotionally manipulative . According to the report regarding most pedophiles are men than women. However, women have more selfcontrol and also have the same abilities for fetishes. On the other hand, adult female comparatively require more degree of emotional connection to enjoy sex and sexual release and children give more or less same feeling in less emotional connection . Female pedophilia have some similarities and differences than male pedophilia . According to Indian study on sexual abuse on children, 29 of 52 females involved in giving physical pain to prepubescent individuals to fulfill their needs . Girls are twice became the victim of sexual attack or unwanted sexual contacts than boys in childhood. About 28 to 68% girls experienced the unwanted sexual contact in terms of pedophilia than boys. In the USA, nearly 88% child abuse cases are pedophilia and 25 to 30% children had disturbed physical and psychological disturbance in their onset age. According to the study conducted in USA 55% of 501 female participants experienced sex in their childhood , 37% experienced sexual kissing and fondling. 35% shown the genitals to the partners, 23% displayed their own genitals, 15% got experience of breasts fondling, 5% participants experienced masturbation, 2% participants experienced intercourse, less than one percent participants experienced oral sex. Furthermore, the 37% participants experienced sex with related male . In one study, it is documented that the pedophiles who were to abuse sexually to girls are 74% and 56.7% abused sexually to boys . In case of female pedophilia, more female want oral sex, fondling, touches to satisfy their wishes with boys and with girls,more women want licking of their genitals or sucking to fulfill their lust . --- Review of Literature Regarding family, people who were victims in their childhood had no knowledge in respectof good or bad about the act . Pedophiles are also skilled in deception and is highly perverse in their conniving. Such individuals can make other close person like himself due to their cunning skills . Friend circle also plays the key role in making and destroying the mind of any individual. Group used to talk about pornography and used to watch it frequently also impacts in increasing the number of pedophile in the society. Through showing lust of money, teen individuals usually obey their wish resulting become sexually abused The Perception, Understanding and Incidence of Pedophilia, The Reasons of its Prevalence, The Problems and the Consequences of this Social Crime in Rural Sindh: A Sociological Analysis . In Asian countries, like other underdeveloped countries, this practice is common among male pedophiles than females . If females do this act, this act includes showing affection to the child. According to the report of the USA, nearly 88,000 children become the victim of pedophiles every year. In most of the cases, in lust of money, this act is done to meet both financial and bodily needs of both partners . Pedophiles are fond of watching pornography. They have distorted thinking, thought blockade andweak verbal communication . Pedophilesfrequently rationalize and normalize their sexual interaction with children. Since childhood, this practice of being into delusional ideation and also thinking of not goof things, these things later converted into addiction . According to some report, about 73% teen girls are targeted to sexual act by the strangers . Furthermore, with negative childhood experience pedophiles commit sexual crime. In friendships this act is also common . In addition to sexual crime, juvenile sex crime is very common now all over the globe particularly in the Western countries among school and college students . According to a report, 35.6% sexual crimes are contributed by the juvenile child sex crime . To meet financial needs, many children do work where they are sexually abused to release the stress of the owners or other people . Adults who were the victims of sexual abuse during their childhood has relatively strong abusive behaviour . In many cases of child sexual abuse, child gets trauma like the skin, hair, oropharynx, labia majora, labia minora, posterior fourchette, urethera, hymen get injured and the child has the strong palpation and fear and other emotional disturbances . According to the one report, internet pornography is truly staggering that at every second 28,258 user of internet are watching pornography . Every year more than 90 billion revenue is generated by pornography and 34% are contributed by the child sex activity . The average age of the first internet pornography exposure is 11 years old . Showing pornography materials to the child is the first step of the child towards the sexual activity leading to physical touching . Extensively, pornography affects the social relationships and also increases the rate of sexual violence against females. This act increased twice in the last two decades . Pedophilia in Pakistan:According to the report about eight children are sexually abused every day in Pakistan. The most of the victims are girls . Many studies documented that regarding pedophilia that in many tribal areas of FATA, sex with young children is considered as their traditional part wherein the adolescent male child involved in sexual activity with adult men. This act is common in Iran, Afghanistan and tribal areas of Pakistan. Moreover, many adult men go for marriages to that adolescent boy child and in their culture this is acceptable . Many girls are also affected due to the separation of parents or no guardian for their supervision . --- Methodology Objectives of the Study:The objectives of the study was to find out and determine the following: The types of the child sexual abuse encountered by the victims, temptations used by the abusers to seduce the victims, the impact of child sexual abuse on the victims and the impact of child sexual abuse on the family of the victims. --- Study Design: The study design was mixed method i. e. Qualitative and Quantitative. The Qualitative part was an in depth study involving police officials of the locality and CMOs (Casualty Medical Officers of government hospitals of the district Khairpur who deal with pedophilia / child sexual abuse cases. Study Setting:The study was conducted in Khairpur, a district in Sindh province of Pakistan. Duration of the study was six months from May 24, 2021 to November 19, 2021 . The qualitative study was conducted first. Based on the findings of qualitative study quantitative study was done through field survey. Population and Sampling:Qualitative Method: Qualitative study was done involving ten police officers and ten CMOs of the selected districts. Quantitative Method:Population: All parents and or their victim children from the selected districts of 5-19 years of age of both genders were the population. All males of 13 years from the same districts and above were the population for abusers. Sampling: Parents of victims or the victims themselves with the consent of their parents. The researcher targeted 50 respondents at the start of our survey, but ended up with 42. Abusers: Males of 13 years and above who gave their consent under the condition of confidentiality were the samples for abusers. The researcher targeted 50 respondents at the start of our survey, but ended up with 46. In view to make the sampling synchronized the researcher finally took 42 abusers. The abusers were located and identified through the help and cooperation of police officials of the area. It may be noted that the victims and abusers used in the study have no direct relationship. That means the victims were abused sexually by a different group of abusers and the surveyed abuser used a different set of victims for their sexual gratification. The Perception, Understanding and Incidence of Pedophilia, The Reasons of its Prevalence, The Problems and the Consequences of this Social Crime in Rural Sindh: A Sociological Analysis --- Research / Data Collection Qualitative Approach: In depth study was conducted involving ten police officers of the districts and ten CMOs who deal with child sexual abuse cases. A predesigned open ended questionnaire was used for this purpose. The questionnaire was developed on the basis of a report on child sexual abuse Quantitative Approach: The questionnaire was developed on the basis of a report on child sexual abuse Inclusion and Exclusion Criteria: Inclusion Criteria:Victims: Parents of victims and or the victims themselves of both gender of age 5 -19 years. Abusers: Males of 13 years and above. Exclusion Criteria: Those who did not fulfil the inclusion criteria. The Research Procedure: The qualitative study was done with the participants by taking prior appointment for the in depth study. Before the actual interview a brief meeting was conducted with the participants explaining the subject and whole procedure for the consent, good understanding and contribution in the discussion. Those we gave their consent and time were later contacted for the in depth interviews. For quantitative survey the process was briefed to the participants and their consent was obtained under the condition of confidentiality. This followed the survey. --- Data Analysis: The qualitative data was analysed using the theme, subtheme and remarks. The quantitative data was analysed using SPSS and Excel software applications. Ethical Considerations: All participants in the qualitative research were first briefed the subject and then included with their consent for the in depth study. In quantitative research all participants who gave their consent for participation in this research study i. e. parents of victims were included with prior information about the research study. The abusers were included with a guarantee of confidentiality and with prior information about the research study. --- Result Qualitative Study The qualitative research was done by in depth study involving ten police officers of the districts and ten Casualty medical officers of local public hospitals who deal with child sexual abuse cases. Parents also feel that their child was innocent at the time of the crime and was tempted or threatened to comply by the abusers --- Perception of the Society The society is very much aware of the crime but they are more sensitive for girls than boys. Up to some extent they are ignorant too and that is the reason the crime is increasing. The parents understand that it is not easy to control the crime, since the children remain outside the home for a considerable hours of the day. --- Understanding of the Society The society feels that the widespread social media and the pornographic videos are responsible for the increasing rate of this crime. The problem is increasing. This is making the victims, afraid, apprehensive, aloof and they do not trust anyone anymore. They also get low grades in their academia The girls feel that since their virginity has been lost they are afraid that they are no more valuable girls / women. The grown up ones even refuse marriage --- Opinion as Mentioned by the Police Officers The abusers cannot be punished because of their influence. Most of the time it cannot be proven. Sometime the parents refuse to make it a case for follow up. --- TYPES OF THE ABUSERS Relatively Known Among the relatively known abusers relatives, friends, acquaintances, teachers, moulvis were more frequent. Incest was also reported. --- Relatively Less Known or Unknown Relatively less known or unknown abusers included shop keepers, police, drivers, security guards and strangers Victims were emotionally and mentally hurt. The more grown ups felt that they were treated unfriendly in a friendly atmosphere. They were of the opinion that they trusted the abusers for not doing anything wrong. --- Cmo's Opinion about the Crime Children should be provided emotional security at home so that they do not try to find it somewhere else. The crime occurs mainly because of the lack of emotional support from the parents. --- Cmo's Opinion about the Society The society should be more vigilant about children's involvement on mobile and laptop as well as outside activities. The vulnerable places like empty school buildings after school hours, rooftops, fields, garden and parks should be monitored for any kind of such activities. --- UNDERSTANDING OF THE SITUATION BEHIND THE CRIME --- Situation for Minor Minor children are shown the sex organ of the abuser and tempted to touch and play with it. During the process the child get closer physically and the crime is committed with consent or by force. The child submits unwillingly with minor physical resistance. --- Situation for Grown Ups Grown up children were already on friendly terms with the abusers. They watch pornographic materials together, get stimulated and then the crime is committed. --- Types of the Crime Mostly sodomy, since the sexual parts of the victims are not fully grown for penetration. Forced sodomy follows if the child is resistant. Rape occurs in grown up girls. In case any girl has misbehaved with the abuser earlier, a planned gang rape occurs. The Perception, Understanding and Incidence of Pedophilia, The Reasons of its Prevalence, The Problems and the Consequences of this Social Crime in Rural Sindh: A Sociological Analysis --- FEELINGS OF VICTIMS AT THE TIME OF CRIME Feelings of Minors All the minors of both genders remain scared and frightful during the act. --- Grown up Boys and Girls Both the boys and the girls were mostly gave their consent just to explore what happens next. Few of them enjoyed the act while most of them did not. In exceptional cases of grown of girls theyenjoyed the act while submitting unwillingly. --- REASONS FOR THE PREVALENCE OF PEDOPHILIA --- Reasons as Complained by the Parents According to parents society is responsible for such crimes. The widespread availability of pornographic materials in hard copy as well as soft copy are shared among the kids, tempting them to proceed with the sin. The free mix up of boys and girls in schools and madrassa is also a reason. --- Reasons as Mentioned by the Cmos During the teen age, a boy become a man and a girl a woman. Their physiological characteristics demand sexual outburst and gratification. The crime is a secondary outlet of the physiological urge of boys and girls. The abusers are mostly men or boys. They are more aggressive in fulfilling their desire by using a sex partner rather than musterbation. --- THE PROBLEM OF PEDOPHILIA Place of the Crime The mostly reported place of crime were school, madrasa, victim's place, shop, park, empty plot, graveyard, police station etc. --- Reasons of Abuse Reasons of abuse which the abusers convinced to the victims were fun/enjoyment, thrill, attractive partner, friendly relationship, student. It was also found during the discussion with mothers, that they misbehaved some of the young men in the past and they abused their daughters as a revenge to the mother. --- Period of Involvement Period of involvement were varied from a single attempt to six months or more. The expanded duration was mostly with the grown up boys and girls who enjoyed the crime themselves as well. --- CONSEQUENCES OF THIS SOCIAL CRIME Consequence of the Victim For most of the victim particularly the minor ones it is a traumatic experience. They never able to forget this abuse. The grown ups have varied memory, but all of them have a guilty feeling of the act, particularly the girls. --- Consequence for the Family Victims of the family become more precautious, more apprehensive, more suspicious and less social. They feel that their child has been abused due to the prevalence of this crime in the society While mentioning the feelings of the victims the following were the findings : 92.9% of the respondents either agreed or strongly agreed with the statement that the child was emotionally wounded and traumatic. 88.1% of the respondents either agreed or strongly agreed with the statement that the child became frightened. 76.6% of the respondents either agreed or strongly agreed with the statement that the child became depressed. 42.8% of the respondents either agreed or strongly agreed with the statement that the child became lonely and aloof. 85.7% of the respondents either agreed or strongly agreed with the statement that the child became suspicious. 80.9% of the respondents either agreed or strongly agreed with the statement that the child became unfriendly. 76.2% of the respondents either agreed or strongly agreed with the statement that the child was securing low grades at school. 73.8% of the respondents either agreed or strongly agreed with the statement that the child's social interaction was inhibited. While mentioning the feelings of the parents the following were the findings : 52.4% of the respondents either agreed or strongly agreed with the statement that the parents became emotionally wounded. 50% of the respondents either agreed or strongly agreed with the statement that the parents became vindictive to the society. 71.4% of the respondents either agreed or strongly agreed with the statement that the parents became depressed. 52.3% of the respondents either agreed or strongly agreed with the statement that the parents became suspicious of the social environment. 52.4% of the respondents either agreed or strongly agreed with the statement that the parents became secretive in their talk and behaviour. 76.2% of the respondents either agreed or strongly agreed with --- Quantitative Study The Perception, Understanding and Incidence of Pedophilia, The Reasons of its Prevalence, The Problems and the Consequences of this Social Crime in Rural Sindh: A Sociological Analysis the statement that the parents became introvert. 69% of the respondents either agreed or strongly agreed with the statement that the parents became more caring and loving to the affected child. 59.6% of the respondents either agreed or strongly agreed with the statement that the parents became less social. 38.1% of the respondents either agreed or strongly agreed with the statement that the parents became more God fearing. Information about the children : 52.3% of the respondents either agreed or strongly agreed with the statement that the victims were minor and innocent. 64% of the respondents either agreed or strongly agreed with the statement that the victims were unaware of the intensions of the abuser. 61.9% of the respondents either agreed or strongly agreed with the statement that the victims trusted the abuser for not doing anything wrong. 50% of the respondents either agreed or strongly agreed with the statement that the victims were tempted and convinced that this was not a sin or crime. 64.2% of the respondents either agreed or strongly agreed with the statement that the victims were unaware of the intensions of the abuser. 71.4% of the respondents either agreed or strongly agreed with the statement that the victims were unaware of the psychological trauma they were going to experience later. Abusers' Information : 40.5% of the respondents either agreed or strongly agreed with the statement that the abuser tempted the victim with sex stories and jokes. 52.3% of the respondents either agreed or strongly agreed with the statement that the abuser tempted the victim with pornographic materials . 52.4% of the respondents either agreed or strongly agreed with the statement that the abuser tempted the victim by showing their sex organ. 57.1% of the respondents either agreed or strongly agreed with the statement that the abuser tempted the victim by caressing, enticing and cajoling. 38.1% of the respondents either agreed or strongly agreed with the statement that victims consent was taken before the act, 33.3% of the respondents remained neutral on this question. 59.5% of the respondents either agreed or strongly agreed with the statement that on refusal of the victim, the act was done forcefully. --- Conclusions and Recommendation The research concludes that pedophilia or child sexual abuse is a serious problem of the society. Due to our traditional set up parents do not share the sexual victimization of their children. Therefore the reported cases are only the tip of the iceberg. Moreover, the abusers do not get caught or punished by the law enforcing agencies either due to their high contacts or due to bribe to the police which is quite common in the locality where the research was done. Minor children are more vulnerable particularly in a school or madrassa setting where the teachers or moulvistake undue advantage of their students since the minor children go to madrasa for religious teaching. The more grown up children are victimized by their acquaintances and neighbours or peers. Since paedophilia gets sexual gratifications from children, they mostly do it for thrill or lust. During our discussion with the parents a new dimension of child sexual abuse was revealed to us. That was that in case the mother or the grown up girls have a tendency to misbehave with men, the minor girl is victimized where the mother is usually not available, the grown up girls with misbehaviour get into the trap themselves. This was also confirmed by the abusers whom we got to know through our contacts in the police department. However, some of the grown up girls confessed that they enjoyed the crime. These were the girls who continued with the abuse for a longer period i. e. six months or more. Some of the boys also confessed that while in the initial phase they were the victims and played passive role, but as the time passed they became the active players The Perception, Understanding and Incidence of Pedophilia, The Reasons of its Prevalence, The Problems and the Consequences of this Social Crime in Rural Sindh: A Sociological Analysis too. They also confessed that they enjoyed the pornographic videos shown by the abusers for temptation and consent. While it becomes clear that the main victims of child sexual abuse are the minor children who have not yet developed their sexual organs fully and unaware of the sexual gratification. For minor girls their sex organs are not sufficient enough for penetration and therefore sodomy results, making the experience unenjoyable, uncomfortable and painful as well. It is quite strange to find that the Western society which is quite liberal in these terms also have paedophilia or child sexual abuse. This has made us to conclude that sexual gratification is not always the primary objective of the abusers. As mentioned above sometime it is taking revenge of the victim or her mother as well.
The objective of the study was to find out and determine the types of child sexual abuse, temptations used by the abusers to seduce the victim, the impact of child sexual abuse on the victims and the impact of child sexual abuse on the family of the victims.The study was conducted using mixed method i.e. Qualitative and Quantitative. This was a six months study. The qualitative study was conducted first. Based on the findings of qualitative study Quantitative study was done through field survey. For qualitative study police officials and Casualty Medical Officers (CMO) were interviewed in depth. For quantitative research Parents of victims or the victims themselves with the consent of their parents were interviewed. Qualitative data was analyzed using the Theme, subtheme and remarks while the quantitative data was analyzed using SPSS (26 version) and Excel software applications. Most of the children appeared to be innocent and the minor children considered the act vulgar and indecent. The more grown up ones considered it unethical and were having some guilt. Similar feeling were shared by the parents about the child. The society is very much aware of the crime but they are more sensitive for girls than boys. Up to some extent they are ignorant too and that is the reason the crime is increasing. They became frightened, depressed, lonely and aloof. The parents became depressed and also suspicious of the social environment. They became secretive in their talk and behavior. Abusers tempted the victims with sex stories, jokes pornographic materials (photos and videos) and by showing their sex organs.
Introduction On February 6th, 2023, Türkiye's eastern region was hit by a catastrophic doublet earthquake, which heavily affected more than ten cities with a total population of over 15 million, including Syrian migrants . The Minister of Interior Affairs of Türkiye stated on April 5th that over 50,000 people had lost their lives , and the President of the Disaster and Emergency Management Presidency of Türkiye declared on March 20th that over 100,000 people were injured . Most casualties were reported in the Turkish cities of Adıyaman, Gaziantep, Hatay, and Kahramanmaraş . At this juncture, it is crucial to be aware of the challenges associated with obtaining updated national statistics related to the earthquake. Numerous ministries and organizations, both national and international, have joined forces to respond to the devastating earthquakes in Türkiye. The Ministry of Justice, Ministry of Family and Social Policies, Ministry of Foreign Affairs, and Ministry of Health, among others, have coordinated efforts to provide aid to those affected. These include setting up coordination centers and field hospitals, offering psychosocial support, providing education and training for all age groups, establishing youth centers, constructing new dormitories for students, caring for livestock, offering debt restructuring, and credit to small businesses, investigating damaged buildings, relocating prisoners and executing several other post-disaster response efforts . Approximately 1.7 million Syrian migrants live in these Eastern Türkiye provinces affected by the earthquake . On March 13th, the Minister of Interior Affairs disclosed that more than 6,000 foreign nationals, predominantly Syrians, had lost their lives . The latter fact was further corroborated by a distinct media outlet, which asserted that approximately 50 percent of the bodies of 6,000 decedents were repatriated to Syria . Additionally, the Minister of National Defense announced that approximately 42,000 Syrians had returned to Syria following the earthquakes . Many governmental authorities, United Nations agencies, and nongovernmental organizations working with Syrian migrants contributed to post-disaster response and recovery activities in an inclusive manner, conducting needs assessments and providing humanitarian relief items including tents, food, water, diapers, sanitary pads, wet wipes, and sleeping bags . Governmental bodies have continuously implemented interventions to minimize the effect of the earthquakes on Syrian migrants. An initial announcement was made permitting migrants registered in the affected provinces to relocate to another city without a travel permit for 90 days. However, the Directorate General of Migration Management later imposed limitations on eligible cities and duration . Notwithstanding their exposure to the same disaster as citizens, this vulnerable group, who lacks the right to unrestricted mobility, confronts a range of obstacles across the disaster's response and recovery phases. As per a report by another non-governmental organization, Syrian migrants encountered multiple challenges subsequent to the earthquake, such as discriminatory language, insufficient availability of housing, and restricted access to aid. The report proposes various possible remedies, including taking a firm stance against defamatory and discriminatory news targeting migrants, and ensuring a robust dissemination of accurate information . Migrants, who already struggle with numerous social determinants of health in normal times, face multidimensional challenges in times of disaster. Disasters often exacerbate existing inequalities and make it even more difficult for vulnerable groups to access healthcare and other essential services . For migrants, these challenges include language barriers, lack of access to information, limited social networks, substandard living and discrimination . In addition, disasters can result in new displacement, loss of livelihood, and other economic hardships that can further impact health outcomes . The intricate interplay of different factors highlights the need for tailored interventions and policies aimed at minimizing the effects of disasters, particularly in vulnerable groups, such as migrants . Behind all these post-disaster environment challenges is another phenomenon that is difficult to quantify and characterize, namely uncertainty. Uncertainty can manifest in various facets of the pre-disaster period or emerge as a consequence of the disaster, subsequently exacerbating the situation. Uncertainty refers to a subjective state of cognitive and emotional unease characterized by a lack of predictability, clarity, or confidence about future events, outcomes, or information. It is a fundamental aspect of human cognition and decision-making, stemming from the inherent limitations of knowledge, information gaps, and complexity of the world. It involves a range of psychological and emotional experiences, including doubt, ambiguity, and insecurity . The immediate aftermath of a mass casualty event like disaster is marked by a period of heightened uncertainty . Disasters frequently affect people and communities profoundly and permanently, bringing uncertainty and interruptions to many aspects of daily life . Chaos and unpredictability are frequent features of post-disaster environment, that can increase stress and uncertainty in affected individuals . People may find it difficult to re-establish a sense of security and control in their lives following a disaster, which can cause a protracted period of uncertainty . The experience of uncertainty has multifaceted impacts on human health and well-being, irrespective of the underlying condition, causing to feel anxious, helpless, and depressed . During periods of uncertainty, the brain's metabolic demands escalate, and if the state of uncertainty endures, it may lead to a cerebral energy crisis that can result in burdening the individual by 'allostatic load' contributing to systemic and brain malfunction . Furthermore, apart from its impact on physical wellbeing, uncertainty is a significant determinant of poor mental health outcomes. Numerous studies have put forth the notion that the subjective experience of uncertainty has an adverse impact on the mental well-being of individuals across diverse environment . Uncertainty becomes a complex interwoven structure influenced by numerous external elements when incorporated within the framework of migration and post-disaster environment. Current academic literature reveals a lack of publications adopting a comprehensive approach that brings together the topics of uncertainty, migration, and disasters. However, existing literature does provide insights into the uncertainties experienced by migrants. The causes for uncertainty range from access to education and healthcare, exposure to violence, and so on . The emotional instability experienced by migrants is a consequence of the complex interplay of political and social factors linked to their displacement, resulting in a pervasive sense of uncertainty that significantly affects their overall well-being and mental health . Disasters often have a profound impact on the population living in affected areas. These events can lead to significant physical and emotional trauma as well as economic and social disruption. In the aftermath of disasters, the resilience of affected populations can be severely tested and their ability to cope with stress and uncertainty can be compromised. This can lead to increased tensions and conflicts, particularly in situations where resources are scarce or competition for resources is high . In regions with large refugee and migrant populations, the impact of disasters can be even more significant. This information together with the potential of disasters to contribute uncertainty highlight the complexities and challenges regarding uncertainties faced by migrants in post-disaster environment. Examining uncertainty as a phenomenon, particularly in relation to the long-term effects of disasters on migrants, might help promote adequate public health interventions for migrants and highlight a number of background factors that may have subtle but significant dual impacts on health. However, the comprehension of intricate and multifaceted concepts as uncertainty, that cannot be directly quantified, necessitates methodologies that diverge significantly from the most commonly used public health research methodology. Fortunately, the field of public health is characterized by its dynamic nature, as it consistently integrates diverse disciplinary perspectives and employs a variety of methodological approaches . One such approach that is gaining prominence in today's increasingly interconnected social world is social network analysis . As an open access and continuously updating source of data, social media analysis is proving to be a valuable tool in the field of public health , particularly in crises situations with limited data collection opportunities . It also takes on being a useful tool as a transparent window into the explicit and implicit dynamics of daily life after a disaster, while been used intensively and with impunity. We presume this method enables an indirect perspective to access discussions in where possible post-disaster uncertainties among migrants are hidden. We aimed to explore how a post-disaster environment potentially generates new uncertainties or exacerbating pre-existing ones for migrants through social media analysis with an indirect perspective, in the context of 2023-Earthquake in Türkiye and Syrian migrants. We attempted to understand the research subject through analyzing social media content limited by hashtags and generated in the host country's language and interpretation of these media content regarding the recent literature and current sociopolitical atmosphere in the context of 2023-Earthquake in Türkiye and Syrian migrants. --- Methods --- Social network and summative content analysis We employed a social network analysis methodology using Twitter data in this research to serve as a transparent window into the explicit and implicit dynamics of daily life after a disaster and consolidated with content analysis. Our methodological steps were to construct a network graph based on user interactions to understand the social network dynamics in post-disaster environment in order to serve as a baseline for content analysis, and conduct summative content analysis, wherein the analysis commenced with a word count and later the main point of tweets were identified with using an inductive reasoning in order to explore the research subject. --- Data collection To gather and focus the research related data, we searched for public tweets related to our research question containing the hashtags in Turkish 'Syrian ' and 'earthquake ' during a 10-day period beginning on March 22nd, 2023. We defined our network in this research as a group of Twitter users who use these two hashtags and some of whom engage in some form of interaction with each other. In our network, there were 2,126 different type of Twitter actions including tweets and any kind of interactions which refer to the dynamic and interactive engagement between users on the Twitter platform, involving various forms of communication, such as retweets, replies and mentions. We utilized Twitter's application programming interface to collect network data, which provided us information including the tweet's author, content , time, and any mentions or replies. The inclusion criteria for tweets were having both hashtags and there were no exclusion criteria for the social network analysis. --- Data analysis We analyzed the social network graph utilizing NodeXL, a validated methodology used in previous research . We calculated several social network analysis metrics, such as in/out-degree and Eigen vector to understand the structural properties of the social network, including the flow of information, the importance of nodes, and their influence within the network. We identified influential users by using the betweenness centrality metric, designed to rank users according to their position in a network . The Clauset-Newman-Moore algorithm is employed for clustering the vertices of the social network to identify groups of closely connected nodes within the social network, allowing us to analyze interactions within these distinct subgroups. We used two stages to include tweets in content analysis. The first stage was to directly include all tweets within the most interacted groups determined based on having a larger number of edges exceeding 15, with a second check by the researchers to ensure that there were no meaningless tweets, such as hashtags-only or nonsense wording. This stage ensured to capture tweets that are highly engaged with and have the potential to reflect important discussions or trends within the social network. The second stage was identifying tweets within our dataset that could potentially provide valuable insights to address the research question, irrespective of their inclusion in the most interacted groups. To achieve this, the researchers removed all tweets posted by these most interacted groups from the entire tweet dataset, examined the remaining tweets, and selected those for inclusion in the summative content analysis by consensus. This second stage safeguarded not to exclude any content that may be valuable to the research question. We combined all tweets from most interacted groups = 16) and 15 tweets identified from smaller groups by the second-scanning of the entire dataset. This step compiled a comprehensive dataset of tweets that represent both highly engaging conversations and additional valuable perspectives. After removing duplicates, we analyzed a combined text of 27 tweets using Voyant Tools, an open-source web-based text analysis tool , to identify the most 20 frequently used words. By examining the frequency of words we targeted to grasp common themes, topics, or sentiments expressed in the tweets and gain a deeper understanding of the content being shared. The researchers assessed the place of most frequently used words in the combined text and aimed to find the tweets that including these most frequently used words to identify recurring patterns or key themes that emerge from the tweets, providing insights into the underlying common message or focus of the circulated conversations. In our research, each of 27 tweets included at least one of these most frequently used words. Tweets were read and re-read, and the main point of each tweet was identified and examined in the context of the research question based on the literature and qualifications of the researchers working in this field. Concurrently, the most frequently used words in these tweets were re-evaluated and it was consented that some words did not have a direct link to the research question and given that the frequent use of these words would not lead to any induction. The top 20 most frequently used words were then sorted into two categories to provide a structured framework for further analysis and interpretation. Material-related category, in which most frequently used words have no connotation or literal meaning associated with main points of tweets and Meaning-related category in which each of these most frequently used words plays a representing keyword role of the main point of tweet. At that point, the researchers decided to proceed with the inductive reasoning process by utilizing tweets including words belonging to the meaning-related category. The decision to analyze tweets included in this category was driven by the goal of capturing dominant meaningful themes and discussions related to the research subject, ensuring a comprehensive and utmost representative analysis of the prevailing sentiments and key topics within the available data. In line with recent literature, current events, and relevant sociopolitical issues we performed inductive reasoning, to assess the main point of each tweet as one potential way how post-disaster environment might generate new uncertainties or exacerbate pre-existing ones for migrants. Through the process of inductive reasoning, we analyzed the available scientific knowledge to draw logical conclusions and uncover probable insights regarding potential ways. And we designated these potential ways as the research subject, entitled 'possible post-disaster uncertainties among migrants' . Meaning-related category was renamed to uncertaintyrelated category because every tweet that contained the words in this category was agreed to be linked to the research subject . Some main points of tweets were identified as having almost identical phrasing to the most frequently used uncertainty-related words. Diverse phrases of main points have also been identified owing to the varying connotations of uncertainty-related words and their neutral semantic structure. Each of these main points of tweets represents possible post-disaster uncertainty among migrants . --- Quality assurance Quality assurance was performed in reporting this research based on the Social Networks in Health Research guideline, which was published as a preprint on April 25th, 2023 . --- Linkage with Ph.D. dissertation This research serves as a supplementary study to a public health dissertation, wherein an uncertainty scale is developed for migrants, and the relationship between uncertainty and the health status of adult Syrian migrants is analyzed, in order to enhance the comprehension of phenomenon in different settings. The theoretical framework of this dissertation research series is rooted in the notion that uncertainty may function as a social determinant of migrants' health and understanding this phenomenon could help tailor public health interventions to the specific needs of migrants, focusing on the increasing momentum of uncertainty in migration and its evidencebased impact on poor health outcomes. --- Results There were 1918 Twitter users within our dataset. The dataset consisted of n = 274 tweets, n = 124 replies and n = 1726 mentions in total 2,126 Twitter action . The network had a high mentions percentage , which indicates that Tweets on a certain topic are frequently discussed by users and influence the network more than others. The variability in users' contributions to the hashtag discussions was substantial, as indicated by the wide ranges in out and in degrees. High betweenness centrality, closeness, and eigenvector metrics shows that certain content and users had a greater influence on the overall network and were more effective in connecting different vertex than others . The social network analysis conducted on the data uncovered that the conversations related to Syrian migrant and earthquake were formed across multiple groups. Figure 2 presents a graphical representation of how these sub-groups contributed to shaping the overall network and discussions revolved around the aforementioned topics. In total, there were 49 groups with more than three edges, out of which 16 groups were identified as having more than 15 edges. The larger dots in the figure represent users who had a significant influence within the network, measured by the betweenness centrality metric. The bold lines delineate the dynamics of intergroup interactions within a given social network. The network's clustering analysis reveals the formation of groups centered on a particular tweet and its associated interactions, indicating the need for further investigation into which content is spread more than others in post-disaster environment. Table 2 presents data on the top interacted tweets, which means that it has garnered some form of response or engagement from the Twitter community and user characteristics of the first 10 groups sorted by vertex number which represents group members. Upon examining the originators of the tweets disseminated within the group, a diverse array of Twitter users can be observed, ranging from academics and journalists to government officials. In these groups, the tweets about Syrians in aftermath of the earthquake that were most frequently discussed centered around issues with border security and moving back to the country of origin. Some other Twitter users employ these two hashtags as a means of increasing their visibility using the country's top topic agenda, even in the absence of any significant content. In particular situations, hashtags are used to deliberate upon the prevailing political agenda of the nation, particularly in relation to the ongoing electoral proceedings. 27 Tweets that were jointly decided as a data source to summative content analysis after extracting contents from the top-ranked groups, examining content in smaller groups and removing duplicates. The continuous presence of the analyzed terms shown in streamgraph , 'Syrian' and 'earthquake' throughout the combined tweet text data indicate the consistency of the content. Following word cloud analysis of all tweet data merged, Figure 4 depicts the most frequently used words. As anticipated, the designated hashtags 'Syrian' and 'earthquake' were most commonly observed within the dataset. The Word Links Graph provides insights relationships of top 20 frequent words as a visual representation. The most frequently used words are sorted into two, material-related and uncertainty-related by reading and re-reading of the entire content. After removing direct-material-related words as 'Turkey [Türkiye] , earthquake, country, zone, Syrian, condition, days, away, immigrants, victim, allow' , most frequently used uncertainty-related words remained as 'aid, vote, house, citizen, Afghan, illegal, children, border, and leave'. Tweets containing the aforementioned 9 words have been observed to address a range of main points, including but not limited to educational opportunities; "University opened up a lot of places for Syrian students, why don't they take our children from the earthquake zone" "If you pay attention, earthquake aid has benefited Syrians the most" "They say if you register here, all aid will be cut off" and expressions of emotional reproach from a Syrian mother seeking housing for her children; --- "We don't want anything. We just want a container for the children to live in…" or narratives about illegal migration; "How many Syrian and Afghan illegal immigrants entered Turkey [Türkiye] after the earthquake?" Of the tweets pertained to uncertainty-related words, 9 main points were identified; being an undocumented migrant, concerns about deportation and housing, being or having a child, inequality of rights between being a citizen and non-citizen, being in a minority within a minority and access to education or generate new ones for migrants, such equitable distribution of aid, political climate of the host nation. With concentrating contemporary environment of the country and literature, the discussion section delved into a detailed explication of these main points which were identified as possible post-disaster uncertainties among migrants. --- Discussion The research was designed to draw inferences from the content of collected tweets with hashtags 'Syrian' and 'earthquake' about the particular aspects of post-disaster environment which may have the potential to generate new or exacerbate pre-existing uncertainties encountered by migrants. Although social network analysis has certain limitations in its application to this topic, an analysis of community-generated content can still provide valuable insights into the matter under research. Representing the patterns of co-occurring words and discussions provides a deeper understanding of the phenomenon. It can also help identify trends and emerging topics, as well as provide insights into the language and discourse around a particular issue or event. Whilst knowing the limitations of generalizability, it is posited that the comprehension of intricate designs by multidisciplinary disciplines, such as public health will enhance the effectiveness of interventions within those. The aftermath of a disaster poses unique challenges to those affected including migrants, who often experience heightened uncertainty and ambiguity in such environments. Apart from the uncertainties arising from the disaster per se, the post-disaster Social network graph clustered into group. Larger dots represent users who had a significant influence within the network, measured by the betweenness centrality metric and the bold lines delineate the dynamics of intergroup interactions within a given social network = 16). environment may give rise to fresh uncertainties by engendering new issues and reorganizing pre-existing ones, as political instability and the legal status of undocumented migration . The uncertainties encountered by migrants exhibit a close connection with the political climate of the host nation, as shown by the tweets about significant political occurrences and with the most frequently used words as 'vote and citizen'. The combination of being both a Syrian migrant and a victim of the earthquake has rendered Syrian migrants a subject of political discourse, transforming their migratory identity into a political asset during Türkiye's presidential and parliamentary election campaigns as "Three lawyers for each school are needed. The voter lists in houses, especially in areas where Syrian citizens and earthquake victims are located, in the earthquake zone, should be checked. " In this tweet, a user who suspects that Syrian migrants will vote unfairly in the earthquake zone, wants to assign lawyers to schools to prevent this. The statement pertains to the redefined status of migrants given the impact of prevailing political climate and disaster. The aforesaid dialogue is frequently observed in different shapes in social media and underscores the necessity for attention towards the influence of political occurrences on the uncertainty experienced by migrants in post-disaster environment. --- Aktuna and The process of migration is inherently associated with a certain level of uncertainty . However, this uncertainty can be mitigated to a certain extent through the process of settling in the host country and gradually establishing a new daily routine . In instances where a catastrophic disaster occurs in the host nation, the rhetoric of deportation and related media coverage, including tweets and news mentioned the return of 42,000 migrants to their conflict-ridden homelands, might create uncertainty and confinement among migrants. Additionally, being an undocumented migrant can easily make individuals susceptible to the rising border security debates on social media, seen in our contents as "How many Syrian and Afghan illegal immigrants entered Turkey [Türkiye] after the earthquake?" and lead them to further uncertainty. This circumstance may easily impose a mental and social burden on health, affecting all aspects of well-being. The words 'illegal, border, and leave' frequently used in social media analysis invite us to conduct detailed research and stay vigilant in this regard. The difficulties that migrants experience in their new country, including having challenges in getting access to housing and education , are already demanding and cast uncertainty on their future. These uncertainties are further amplified by the internal population movements caused by the earthquake, which disrupted the current dynamics of cities and regions, and pauperized the affected citizens and migrants to the same needs. A discernible attitude of competing interests arises between citizens and migrants, as seen by social media contents linked with the most frequently used word 'house', involving citizens expressing unhappiness with the presence of migrants as tenant "She [a Turkish citizen] lost her house due to the earthquake and now she lives in a tent. She bought another house in the neighborhood. There is a Syrian tenant residing inside. And the Syrian tenant refuses to show her the home or leave the house. Is this how we treat our citizen in this country?" and Syrian migrants seeking housing "We do not want anything. We just want a container for the children to live in…. " The presented contents provide findings for the argument that housing has the potential to be a significant contributor to post-disaster uncertainty. It is important to stress that the absence of essential rights, such as housing, which serve as crucial social determinants of health , alongside the psychological burden stemming from the uncertainty of being deprived of these rights, must be considered in interventions to promote migrant's health. The recurrent use of the word 'children' prompted us to examine diverse sub-fractions of vulnerability in migration status. In addition, the post-disaster environment highlights that vulnerability is not an unilayered structure . The concept of 'vulnerable of vulnerable' holds significant relevance in the context of migrant children in this research, given its comprehensive coverage of the complex ramifications associated with being a migrant, dealing with disaster, and being a child. As evidenced by numerous studies, being a migrant child entails a plethora of negative consequences . The visibility of these negative impacts of being a migrant child is reflected in tweets ranging from a migrant mother seeking housing for her children to criticism of the some of the limited school quotas opened for Syrian migrant children and youth; "University opened up a lot of places for Syrian students, why do not they take our children from the earthquake zone". This inference serves as a useful reference point to capture the layered nature of vulnerability and indicates the need for nuanced and intersectional approaches in addressing the needs of vulnerable populations. This research is also significant in terms of supporting the ongoing -unpublished doctoral thesis of the researcher, in which sub-uncertainty themes including the loss of life and even unknown country of the deceased's burial are identified in the qualitative research part. In the post-disaster context, it has been observed that nearly half of Syrian migrants who lost their lives were buried in Türkiye, while the other half were sent to Syria for burial . For instance, this research aligns with the preliminary analysis in the quantitative section of this thesis, which found that migrant women experience more uncertainty than men. This is consistent with the media-visibility of a mother's concerns for her children. Another confrontation arises between a minority within a minority and a majority within a minority . A few tweets exhibit the utilization of hashtags, such as 'Syrian' and ' Afghan' in conjunction, emphasizing an idea that even within a minority group, particular hashtags have a hierarchical level of popularity in their usage. The aforementioned punctuates the intricate nature of social identities and the stratified presence of visibility within the realm of digital media and underscores different power dynamics appeared in the physical world and resulting climate of uncertainty. The frequent use of the word 'aid' provides valuable insights into both uncertainty and humanitarian aid, with the equitable distribution of aid being identified as a source of uncertainty in post-disaster environment, as seen in such Tweets, "They say if you register here, all aid will be cut off " and "If you pay attention, earthquake aid has benefited Syrians the most. " It may be difficult to ensure that aid reaches those who need it most due to high demand for resources and services, which can cause social tensions to rise and feelings of unfairness. Transparent and equitable aid distribution mechanisms are necessary to foster trust and social cohesion . This would guarantee that funds are distributed based on need, not prejudice or preference, enabling successful recovery and reconstruction operations. The equitable distribution of humanitarian aid holds paramount importance in post-disaster environment due to the potential of unequal access to further marginalize vulnerable communities. After disasters, the sense of destruction and uncertainty can induce panic and uncontrollable behavior . Besides, studies have indicated that looting have a tendency to escalate in the aftermath of a disaster . This can contribute to a decrease in tolerance levels and an increase in hate speech as seen in social media "How many refugees caught while looting should be deported together with their families. " Unverified accusations directed towards migrants through social media and other circulated media content have power to influence the perceptions of the host community to migrants and exacerbate uncertainty experienced by migrants. This phenomenon could lead to increased levels of aggression within the host community. A post-disaster environment has the potential to result in increased social tensions, reduced tolerance levels, and triggered violence , a fundamental public health problem that warrants focus. In this research, analysis of social media was utilized to indirectly explore the potential contribution of post-disaster environment to uncertainty. The purpose of the research is not to scrutinize the uncertainty engendered by social media or the ways in which uncertainty is articulated through social media, but rather to highlight the beneficial role of research based on social media utilization in comprehending uncertainty. However, it is essential to recognize that social media itself can play a role in generating uncertainty in various ways, particularly in crisis settings . Social media platforms offer individuals a virtual arena to share thoughts, emotions, and experiences, particularly during disasters, such as earthquakes. Social media become a hub for seeking and sharing information, expressing concerns, and connecting with others. Users might express uncertainty through ambiguous language, open-ended questions, and seeking advice or reassurance .Understanding how uncertainty is expressed, experienced and generated on the digital platforms provide insight into the wider societal and psychological intersections of the post-disaster environment as a further research topic. Contrary to our main finding which shows the destructive language of social media regarding migrants in post-disaster environment, social media also take on many supportive tasks in times of disaster. It plays a significant role in promoting self-resilience during times of disasters by facilitating information exchange and creating extensive networks for gathering useful information . With its high information capacity, reliability, and interactive potential, social media offer advanced disaster communication opportunities . Moreover, they serve as a valuable resource for crisis management following disasters . During emergency situations, social media are recognized as a crucial tool for responders and decision-makers, as they provide situational and actionable information through text messages and shared images . These characteristics of social media contribute to enhancing disaster response efforts and enabling effective communication among affected individuals, emergency responders, and the wider community. The timely and accessible nature of social media content allows for rapid dissemination of critical information, aiding in the coordination of relief efforts and facilitating community resilience. Therefore, further research should be conducted to investigate whether the language used on social media in the post-disaster context represents a discourse directed towards migrants, if it is merely a reflection of the data collection period in this research, or if it holds significant representational potential. These arguments focus attention on the significance of verifying news and content, developing media literacy, and evaluating social media content in the context of infodemic management. The velocity and influence of data associated with prevalent hashtags, as well as the perturbed dissemination of information, necessitate meticulous evaluation. The careful consideration of the impact of generated content is particularly crucial in sensitive environments, such as postdisaster environment. The results of our cluster analysis indicate that certain individuals possess a considerable influence over extensive audiences, and these individuals ought to refrain from disseminating content that could negatively impact the well-being of migrants. The appropriate use of social media can help in addressing the uncertainties posed by post-disaster environment, rather than exacerbating. This approach displays substantial promise in propelling Word cloud analysis of tweets in the social network . two interconnected fields that have been coevolving in recent pandemic era : public health and infodemic management. --- Limitations There are a number of limitations in this research, including the utilization of Turkish tweets with two main hashtags for analysis and the implementation of an indirect perspective as part of the research design. The lack of inclusion of relevant Turkish hashtags associated with disasters such as emergency, need, and help, may have resulted in the omission of significant tweets, thereby posing a potential risk of being overlooked. It is imperative to meticulously contemplate this aspect in forthcoming research endeavors to guarantee thorough scrutiny of the subject matter. The analysis was conducted using a timeconstrained sample of Twitter data, which may limit the generalizability of the findings to broader population. The data were gathered at the designated time with the intent of circumventing the information overload that transpired during the primary acute stage of the earthquake. It is likely that alternative patterns pertaining to the to open access, data collection had to be kept shorter than originally planned. Furthermore, because social media are not always available to all people, the research might have overlooked crucial viewpoints from people who do not have access to social media. Notwithstanding the aforementioned limitations, this research provides valuable perspectives on the probable impetuses of post-disaster uncertainty among migrants and underscores the necessity of interdisciplinary methodologies to tackle the challenges encountered by these groups. --- Conclusion This research conducted an analysis of social media data in order to gain insight into the potential of the post-disaster environment generating new uncertainties or exacerbating pre-existing ones for migrants in the context of 'Türkiye-2023 Earthquake' and 'Syrian migrants' . Through content and network analysis, we highlighted the importance of discussing current events, relevant sociopolitical issues, and literature to identify the main points of the tweets as possible post-disaster uncertainties among migrants. Our findings emphasize that the post-disaster environment has potential to exacerbate existing uncertainties, such as being an undocumented migrant, concerns about deportation and housing, being or having a child, inequality of rights between being a citizen and non-citizen, being in a minority within a minority, political climate of the host nation and access to education or generate new ones for migrants such equitable distribution of aid which can lead to poor health outcomes. Ultimately, recognizing the possible uncertainties in postdisaster environment among migrants and addressing the probable underlying factors might help to build more resilient and healthy communities. --- Data availability statement The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation. --- --- --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
Objectives: On February 6th, 2023, a doublet earthquake struck Türkiye, impacting more than 15 million people including migrants, and resulting in over 50,000 deaths. The Syrian migrants experience multiple uncertainties in their daily lives which are further compounded by multifaceted challenges of the postdisaster environment. Social media was used intensively and with impunity in this environment and thereby provides a window into the explicit and implicit dynamics of daily life after a disaster. We aimed to explore how a post-disaster environment potentially generates new uncertainties or exacerbating pre-existing ones for migrants through social media analysis with an indirect perspective, in the context of 2023-Earthquake in Türkiye and Syrian migrants. Methods: Social network analysis was used to analyze Twitter-data with the hashtags 'Syrian' and 'earthquake' during a 10-day period beginning on March 22nd, 2023. We calculated network metrics, including degree-values and betweenness-centrality and clustered the network to understand groups. We analyzed a combination of 27 tweets with summative content analysis using a text analysis tool, to identify the most frequently used words. We identified the main points of each tweet and assessed these as possible contributors to postdisaster uncertainty among migrants by using inductive reasoning. Results: There were 1918 Twitter users, 274 tweets, 124 replies and 1726 mentions. Discussions about Syrian migrants and earthquakes were established across various groups (n groups(edges > 15) = 16). Certain users had a greater influence on the overall network. The nine most frequently used words were included under uncertainty-related category (n most_frequently_used_words = 20); 'aid, vote, house, citizen, Afghan, illegal, children, border, and leave'. Nine main points were identified as possible post-disaster uncertainties among migrants.The post-disaster environment has the potential to exacerbate existing uncertainties, such as being an undocumented migrant, concerns about deportation and housing, being or having a child, inequality of rights between being a citizen and non-citizen, being in minority within minority, political climate of the host nation and access to education or to generate new ones such equitable distribution of aid, which can lead to poor health outcomes. Recognizing the
Introduction Chronic Kidney Disease affects millions of people and has become a worldwide health problem [1]. Currently, CKD incidence and prevalence is on the increase globally [2,3]. CKD's progressive nature, the ensuing End-Stage Renal Disease , and its associated cardiovascular morbidity and mortality put a considerable burden on global healthcare resources [4]. Ethnic minority groups in high-income countries have been shown to be disproportionately affected by CKD for reasons that are still unclear. In our recent study, we found that several ethnic minority groups had a higher prevalence of CKD compared to the Dutch host population and that conventional risk factors did not completely explain these ethnic differences, suggesting that other factors play a role [5]. Lower Socioeconomic Status as defined by educational and occupational levels has been suggested to be associated with CKD [6,7]. Several studies, both in the USA and Europe, have shown an inverse relationship between SES and CKD [8][9][10][11]. However, data on the association between educational and occupational levels and CKD among ethnic minority groups are lacking. The limited evidence seems to suggest differential associations of educational and occupational levels with cardiovascular disease and its risk factors among ethnic groups [6,7,[12][13][14][15]. For example, in one study in Amsterdam, the Netherlands, Agyemang et al. found a clear inverse relationship between educational level and metabolic syndrome among Dutch people, but no association among ethnic minority groups of Surinamese origin [16]. For this reason, we used baseline data of the multi-ethnic population study in the Netherlands to assess the association of educational and occupational level with CKD prevalence among the multi-ethnic population; and to assess to what extent the lower educational and occupational levels of ethnic minority groups accounted for ethnic inequalities in CKD risk. --- Materials and methods --- Study population The HELIUS study is a large-scale, multi-ethnic cohort study carried out in Amsterdam, the Netherlands. The general aim of the study is to explore the mechanisms underlying the ethnic differences in cardiovascular diseases, mental health, and infectious diseases. The details of the study including rationale, conceptual framework, design, and methodology have been described elsewhere [17]. Briefly, between 2011-2015, participants aged 18-70 years were randomly sampled, stratified by ethnicity, through the municipality register of Amsterdam. The study included Amsterdam residents of Surinamese, Turkish, Moroccan, Ghanaian, and Dutch ethnic origin. Ethnicity was defined according to the Dutch accepted criteria of using individual's country of birth as well as that of his or her parent [18]. Specifically, a participant was considered to be of non-Dutch ethnic origin if he or she fulfills one of two criteria: he or she was born outside the Netherlands and has at least one parent who was born outside the Netherlands, or he or she was born in the Netherlands but both parents were born outside the Netherlands. Participants were considered as of Dutch origin if the person and both parents were born in the Netherlands. Surinamese subgroups were determined using self-reported ethnic origin. Baseline data were obtained by questionnaire and physical examination. The study protocols were approved by the Institutional Review Board of Academic Medical Centre, at the University of Amsterdam , and written informed consent was obtained from all participants. For the current study, baseline data of 22,165 participants with data available on both questionnaire data and physical measurements were used. Participants with unknown ethnicity , Javanese Surinamese origin , unknown Surinamese origin were excluded. We also excluded individuals with no data on CKD status , resulting in a dataset of 21,433 participants. In the analyses involving educational level, 193 participants with unknown educational levels were excluded, resulting in a total of 21,240 remaining for data analyses. In the analyses involving occupational level, 3,354 participants were excluded, resulting in a total of 18,079 remaining for data analyses. --- Measurements Explanatory variables. In this study, we used education and occupation as the explanatory variables. Participants were asked to report their most recent level of education and occupation. Educational level was based on the highest educational level attained either in the Netherlands or in the country of origin. These were categorized into four groups: those who have never had formal education or had elementary schooling only , those with lower vocational schooling or lower secondary schooling , those with intermediate vocational schooling or intermediate/higher secondary education schooling , and those with higher vocational schooling or university . For the current paper, the lowest 2 categories were combined and together labeled 'low education', the 3 rd category was labeled middle education, and the 4 th category was labeled 'high education'. The occupational level was classified per Dutch Standard Occupational Classification system for 2010. This document provides an extensive systematic list of all professions in the Dutch system. Based on this document, the occupational level was classified into 'elementary', 'lower', 'intermediate', 'higher', or 'academic', based on job title and job description, including a question on fulfilling an executive function. Also, elementary and lower occupational level were combined and labeled "low occupational level", those with intermediate occupational level were labeled "middle occupational level" and those with 'higher or academic were combined and labeled "high occupational level". Proximal and anthropometric factors. Smoking status was classified as non-smokers and current smokers. Physical activity was assessed using the Short Questionnaire to Assess Health-Enhancing Physical Activity questionnaire [19] and was classified into 2 categories: achieving the international norm for recommended physical activity or not. Height was measured without shoes with a portable stadiometer to the nearest 0.1 cm. Weight was measured in light clothing with a Seca 877 scale to the nearest 0.1 kg. Body mass index was calculated as weight divided by height squared . Blood pressure was measured using a validated automated digital BP device on the left arm in a seated position after the person had been seated for at least 5 minutes. Both anthropometrics and BP were measured twice, and the mean of the 2 measurements was used in the analyses. Hypertension was defined as systolic BP ! 140 mmHg, and/or diastolic BP ! 90 mmHg, and/or being on antihypertensive medication treatment, and/or self-reported hypertension. Cardiovascular and chronic disease factors. Fasting blood samples were drawn and plasma samples were used to determine glucose, lipid, and creatinine concentrations. Glucose concentration was determined by spectrophotometry, using hexokinase as the primary enzyme, and total cholesterol, by colorimetric spectrophotometry . Type 2 diabetes was defined as fasting glucose level ! 7 mmol/L and/or self-reported diabetes and/or receiving glucose-lowering medication. Hypercholesterolemia was defined as total cholesterol level ! 6.22 mmol/L. Serum creatinine concentration was determined by a kinetic colorimetric spectrophotometric isotope dilution mass spectrometry-calibrated method . Participants were asked to bring an early morning urine sample for the analysis of albuminuria and creatinine levels. Urinary albumin concentration was measured by an immunochemical turbidimetric method . Urinary creatinine concentration was measured by a kinetic spectrophotometric method . Estimated Glomerular Filtration Rate was calculated using the CKDEPI creatinine equation [20]. Urinary albumin-creatinine ratio was calculated by taking the ratio between urinary albumin and urinary creatinine. eGFR and albuminuria were categorized according to the 2012 KDIGO classification [21]. eGFR was categorized as follows: G1, ! 90 mL/min/1.73 m2 ; G2, 60 to 89 mL/min/1.73 m2 ; G3a, 45 to 59 mL/min/1.73 m2 ; G3b, 30 to 44 mL/min/1.73 m2 ; G4, 15 to 29 mL/min/1.73 m2 ; and G5, < 15 mL/min/1.73 m2 . Albuminuria categories were derived from ACR and were defined as follows: A1, < 3mg/mmol ; A2, 3 to 30 mg/mmol ; and A3, > 30mg/ mmol . CKD risk was categorized into 4 groups according to the severity of kidney disease using the combination of eGFR and albuminuria levels defined by the 2012 KDIGO guideline. Due to the small number of participants in the very high risk category of CKD , high and very high risk groups were combined. Similarly, because of the small number of participants in the severely increased albuminuria category , we combined the moderately increased and severely increased categories. Data analysis. Baseline characteristics were expressed as counts and percentages or means and standard deviations. Studies have reported differential SES association with health depending on which construct was used among different populations [22,23]. We, therefore, presented our results separately for educational level and occupational level. Odds Ratios and their corresponding 95% confidence intervals were estimated by means of logistic regression analyses to examine differences in the main outcome measures between high education and the various educational levels with adjustments for potential covariates [24]. Model 1 was unadjusted while model 2 was adjusted for age and sex [25][26][27]. Model 3 was adjusted for age, sex and education and occupation. Multi-collinearity between education and occupation was assessed by the tolerance statistic because of the high correlation between education and occupation . However, we found no evidence of multicollinearity between education and occupation. The analyses were performed for the total population, educational and occupational levels and stratified by ethnicity. All analyses were performed using STATA, version 13.0 . --- Results --- Characteristics of the study population The characteristics of study participants have been described in detail elsewhere [28]. Briefly, Turkish and Moroccans were younger than Dutch, South-Asian Surinamese, Ghanaians, and African Surinamese. Compared with the Dutch, ethnic minority groups had lower levels of educational attainment and occupation. Ethnic minority groups were more frequently obese and less likely to achieve the Dutch norm for physical activity compared with Dutch people. Ethnic minorities had a lower prevalence of hypercholesterolemia but higher prevalence rates of hypertension and type 2 diabetes compared with the Dutch. Turks and African Surinamese were more likely to be smokers than Dutch people. Alcohol intake was more prevalent among the Dutch participants than among ethnic minority groups. All ethnic minority groups had higher prevalence rates of moderate and severe albuminuria compared with Dutch people. There were no ethnic differences in the prevalence of reduced eGFR . High to very high CKD risk was more prevalent among all ethnic minority groups compared with Dutch people, with South-Asian Surinamese showing the highest risk among ethnic minority groups. Among all ethnic groups, the prevalence of moderate to very high CKD risk was significantly higher compared with the Dutch. --- The association between educational and occupational levels and CKD Table 1 shows the association of educational and occupational levels with albuminuria, reduced eGFR and increased risk of CKD. Low education was consistently associated with higher risk of kidney outcomes . After adjustment for age and sex, the odds of moderate to severe albuminuria, reduced eGFR and CKD risk was higher among participants with low and middle-level education than those with high-level education although not significant for eGFR among those with middle-level education . Low-level occupation was also consistently associated with worse kidney outcomes . After adjustment for age and sex, the odds of moderate to severe albuminuria, reduced eGFR and CKD risk was higher among participants with low and middle-level occupation compared to those with a high-level occupation, although not statistically significant for eGFR among those with middle-level occupation . --- The association between education level and CKD by ethnicity Table 2 shows the associations of educational and occupational levels with moderate to severe albuminuria, reduced eGFR and high to very high CKD risk, stratified by ethnicity. In an unadjusted model, low-level education was consistently associated with worse kidney outcomes among all ethnic groups. Also after adjustment for age and sex, the odds of moderate and severe albuminuria and reduced eGFR were higher among participants with low and middle-level education than those with high-level education among all ethnic groups, although not statistically significant for African Surinamese, Ghanaians, Turks and Moroccan. The odds of high to very high CKD risk were higher among those with low-level education than those with high-level education among all ethnic groups. The association remained statistically significant in the Dutch and South-Asian Surinamese after adjusting for age and sex. --- The association between occupational level and CKD by ethnicity Low-level occupation was consistently associated with worse kidney outcomes among all ethnic groups. After adjusting for age and sex the associations for albuminuria remained statistically significant in the Dutch and South-Asian Surinamese. All ethnic groups had higher odds of reduced eGFR among those with the low-level occupation compared with the highlevel occupation. However, none of the odds in all the ethnic groups were statistically significant after adjustment for age and sex. Similarly, participants with low-level occupation were more likely than individuals with the high-level occupation to have high to very high CKD risk in all ethnic groups. The differences remained statistically significant in the Dutch and South-Asian Surinamese after adjustment for age and sex. --- Contribution of educational and occupational levels to ethnic differences in CKD Table 3 shows the contribution of educational and occupational levels to ethnic differences in CKD outcomes for the total population. All ethnic minority groups had higher odds of albuminuria and high to very high CKD risk than the Dutch even after adjustment for age and sex. Adjustment for education and occupation reduced the odds between the Dutch and all ethnic minority groups but did not fully explain ethnic differences in albuminuria and high to very high CKD risk. When the analyses were stratified by high and low education and occupation strata , the odds of albuminuria and high to very high CKD risk was higher in the ethnic minority groups compared with the Dutch in both low and high educational and occupational levels except for African Surinamese and Moroccan with low educational and occupational levels where no significant differences were found. The associations were generally stronger for the high educational and occupational levels compared to the low educational and occupational level. For eGFR, no consistent ethnic differences were observed. South-Asian Surinamese --- Discussion --- Key findings Our study shows educational and occupational level inequalities in CKD risk among all ethnic groups, although the strength of association differed between these groups. Lower educational level was consistently associated with higher odds of unfavorable CKD outcomes among all ethnic groups. Ethnic differences were remarkable in albuminuria compared with that of eGFR. After adjustment for sex and age, these differential associations remained statistically significant in the Dutch and South-Asian Surinamese. In the other ethnic groups , the direction of association was the same although weaker. Similar results were observed for the occupational level. The lower educational and occupational levels of ethnic minority populations contributed but did not fully explain ethnic differences in CKD outcomes. CKD risk, albuminuria, and reduced eGFR rates were higher among participants with low educational level than those with high educational level. Consistent with the findings of our study, several studies among US populations [29][30][31], and European populations [10,32,33] have shown that low educational level is associated with an increased risk of CKD. The influence of educational level on CKD may operate through several factors such as underlying diseases, behavioral factors, and health care delivery system [10,34]. Earlier studies [35][36][37] have indeed reported unhealthier behavior among individuals with low educational level compared with individuals with high educational level. The observed differential associations between low educational level and risk of CKD was weaker among Ghanaians, Turks, and Moroccans after age and sex adjustments. The explanations for these differential associations are unclear but may be due to, at least in part, differences in cultural distance to the Dutch. Suriname was a former Dutch colony. As results, the African Surinamese and South-Asian Surinamese share a similar culture with the Dutch in terms of language. This means that African Surinamese and South-Asian Surinamese high educational level individuals are more likely to access preventive health messages compared to other ethnic minority groups with limited Dutch language proficiency. Although low occupational level was generally related to worse CKD outcomes in all ethnic minority groups, the associations were weaker among Ghanaians, Turks, and Moroccans. Reasons for worse CKD outcomes in individuals with low occupational level have been partially explored with most studies concentrating on exposure to nephrotoxins such as lead, mercury, organic solvents, glycol ethers welding fumes and grain dust because of the occupational level [38][39][40]. Occupational exposure to nephrotoxins has been reported to be more common in occupations classified as low-level occupations [41]. Occupational status may not directly influence kidney function or onset of CKD, but through associate biologic exposures which may fully or partially explain its relationship with CKD [10]. Some of the pathways low occupational level operate could be clinical, demographic, behavioral, or the differences in the health care delivery system [34]. Seligman et al., for example, found a low occupational level to be associated with poor food and lifestyle choices [42] which directly influence cardiometabolic diseases and impact on CKD risk. Cultural practices such as dietary preferences and lifestyle peculiar to specific ethnic minorities with unfavorable CKD risk may account for the differences observed. The differences in strength of associations of educational level and occupational level with CKD among the ethnic groups may also be due to differences in stages of the epidemiological transition in line with the "diffusion theory" of ischemic heart disease mortality. The theory states that the upsurge of ischemic heart disease commenced in those with high SES since they were the first to appreciate and afford behaviors such as smoking which augmented the risk of ischemic heart disease. The disease then spread to lower SES groups, partially because of rising living standards and partially due to imitation. When the epidemic started to reduce, the higher SES groups were the first to benefit as they embraced behavioral changes, which were required for a decline in risk of ischemic heart disease resulting in reversing the gradient [43]. Earlier studies found no association between educational level and CVD risk factors among ethnic minority groups in Europe. For example, Agyemang et al. did not find a significant association between low education and metabolic syndrome and its components among South-Asian Surinamese and African-Surinamese [16]. These observations could indicate that the educational and occupational levels inequalities in CKD will eventually strengthen in all ethnic groups. Evidence indicates that migrants' ill-health and disparaging risk profiles may worsen with increasing duration of stay in the country of settlement [44]. Our study did not assess migration history of ethnic minorities in relation to CKD risk. However, this may be an underlying factor contributing to the observed differences [45] and may be worth researching in future studies. Promoting healthy lifestyles among individuals with low educational and occupational levels in all ethnic groups may have a major impact in reducing the risk of CKD and its related complications and high costs associated with treating these conditions. Also, ethnic inequalities in CKD were observed in both low and high levels of education and occupation. This suggests that interventions targeted at addressing ethnic inequalities in CKD must include both low and high educational and occupational ethnic minority groups. The strength of our study lies in the use of larger sample size compared to most studies conducted in this area. Also, the use of the multi-ethnic sample is novel to the study and has important lessons for the increasing migration of ethnic minorities into European countries in recent times. Models were estimated using cross-sectional data and therefore we could not establish causality or determine CKD progression despite the robust associations found in this study. SES is defined by various constructs and used in varying ways [46]. In this study, our SES was based on educational and occupational level, only because we lack data on average income levels. It has been suggested that different measures of SES may affect health through different pathways and causal mechanisms [47]. Despite these limitations, our study provides novel findings on the associations between educational level and occupational level with CKD among multiethnic populations, which may assist prevention and clinical management efforts. --- Conclusion In conclusion, low educational level and occupational level were associated with worse CKD outcomes in all the ethnic groups although the strength of the associations differed by ethnicity. If the risk factors of CKD among ethnic minority groups with low educational and occupational levels are improved, one might expect a decrease in the burden of CKD in these groups. and the Public Health Service of Amsterdam, and both organizations provided core support for the study. The HELIUS Study is also funded by the Dutch Heart Foundation, the Netherlands Organization for Health Research and Development , and the European Union . The funders of this study had no role in study design; collection, analysis, and interpretation of data; writing the report; and the decision to submit the report for publication. We gratefully acknowledge the AMC Biobank for support in biobank management and storage of collected samples. --- Supporting information --- S1 Table. CKD risk among educational and occupational strata for all the ethnic groups-The HELIUS study. ---
Ethnic minority groups in high-income countries are disproportionately affected by Chronic Kidney Disease (CKD) for reasons that are unclear. We assessed the association of educational and occupational levels with CKD in a multi-ethnic population. Furthermore, we assessed to what extent ethnic inequalities in the prevalence of CKD were accounted for by educational and occupational levels.
Introduction: Labyrinth walking is an integrative contemplative practice that aims to engage the body, heart, mind, and spirit. In this article, qualitative findings from the first year of a mixed methods study on collective labyrinth walking with a shared intention are described. This form of labyrinth walking is distinct in that it is a social contemplative practice. It expands upon most of the labyrinth walking research to date which has been focused upon the individual. More specifically, practitioners walk labyrinths together in solidarity with the same intention in mind during collective labyrinth walking. This practice can be used locally or non-locally . The study is unique in that it took place at the height of the COVID-19 pandemic which was a time in recent history that evoked fear, uncertainty, grief, isolation, and disconnectedness for many persons around the world. Methods: This sample in this study was comprised of 461 participants from 19 countries who collectively walked labyrinths together with a shared intention on World Labyrinth Day 2021. Most participants were women in middle to later life from the United States. Data was collected through an anonymous online survey and analyzed using the qualitative methodology of interpretive phenomenological analysis. Results: Three predominant themes emerged from practitioners' narrative accounts of their lived experiences: multiple forms of connectedness were cultivated through collective labyrinth walking with a shared intention; --- Introduction Qualitative findings from the first year of a 3-year long mixed methods study on collective labyrinth walking with a shared intention are described in this article. This form of labyrinth walking is distinct in that it involves a shared social experience, either locally or non-locally, in which practitioners walk at the same time in solidarity for the same reason. The study is significant in that it is the first to examine the experience of collective labyrinth walking with a shared intention as compared to prior research on labyrinth walking which has been predominantly focused upon individual labyrinth walking. The study is unique in that it took place at the height of the COVID-19 pandemic which was a period that evoked fear, uncertainty, grief, and isolation for many persons around the world. The study is innovative in its community-engaged field-based design which was aimed at better understanding a real-world scenario in which a contemplative practice was implemented as compared to a lab-based study. The purpose of the study was to learn about labyrinth walking practitioners' thoughts, feelings and insights while collectively walking labyrinths, in multiple locations, at the same time, a little over a year after the COVID-19 pandemic began on World Labyrinth Day 2021. The impetus for the study was the labyrinth community's dedication to walking labyrinths together as an expression of solidarity during an international crisis as well as dedication to research on learning more about this contemplative practice. By way of background, the psychosocial impacts of the first year of the COVID-19 pandemic are discussed to provide context for the study followed by an introduction to the field of contemplative science and practice. A summary of prior research on labyrinth walking is provided as well as a description of the distinct practice of collective labyrinth walking with a shared intention. --- Background Psychosocial impacts of the COVID-19 The first year of the COVID-19 pandemic was a challenging time for many in the recent history of the world. The prevalence of disease and death on a global scale was unprecedented as the virus spread. In addition, a major toll was taken on the financial, social, and emotional health of many . Rates of depression and anxiety in the USA tripled as compared to pre-pandemic levels . Similarly, international researchers reported high levels of anxiety, depression, sleep disturbance, stress, and emotional trauma in the community leading to a call for increased mental health resources as a public health response . Individuals, families, and communities sought ways to protect their health and to maintain their wellness during the COVID-19 pandemic in the context of distress and social isolation. Wellness, according to the World Health Organization , is a "state of physical, mental and social wellbeing and not merely the absence of disease or infirmity." It is a "conscious, self-directed, and evolving process of achieving full potential" . As such, some persons engaged in various forms of contemplative practice for comfort and guidance as they learned to navigate the unique challenges of the pandemic . Labyrinth walking practitioners turned to this unique contemplative practice as a means of coping, maintaining wellness, and cultivating flourishing. --- Contemplative science A goal of the interdisciplinary field of contemplative science, according to Dorjee , is to gain a better understanding of "the core capacities, processes and states of mind modified by contemplative practice" . As such, this interdisciplinary field seeks to understand the capacity of the human mind for self-regulation through metacognitive processes which can be influenced by a person's existential awareness, motivations, and intentions-as well as the contextual factors associated with the practice they are engaging with . Contemplative scientists are interested in learning how various contemplative practices serve to cultivate a range of desirable outcomes. For example, some practices are aimed at increasing a person's capacity for loving kindness and compassion , joy and equanimity , and acceptance and non-reactivity . Other practices seek to generate a sense of meaning and purpose and to cultivate specific strengths and virtues . Contemplative scientists are also interested in studying the shifts and modes of existential awareness that may be induced by a contemplative practice. A practitioner's level of awareness, when first learning how to engage in a specific practice, may be more consistent with their typical or habitual thought patterns. With practice, however, an increased openness to insights into the nature of the self and reality may occur . Best practices for contemplative science research utilize first-and second-person methodologies as well as third person measurements of behavioral and physiological data . --- Contemplative practice The term contemplative practice encompasses a broad-array of mind-body integrative practices each having unique roots within cultural-spiritual and historical contexts. An overarching goal of contemplative practices is to enhance wellbeing through cultivating the recognition of the connections people have to each other . Inherent in this goal is the desire for cultivating compassionate responses toward the self, others, and the world. Perhaps the most notable development within the broader field of contemplative practice is the growth and interest in mindfulness meditation. This area of research has been highly influenced by Kabat-Zinn among other researchers . Mindfulness meditation has shown promising results in a myriad of arenas, including clinical, social, and industrial-organizational psychology as well as education, social work, healthcare, and related disciplines. Centering prayer, Lectio Divina, and labyrinth walking are a few other forms of contemplative practices, although there is less research on these practices as compared to mindfulness meditation. One classification system for the variety of forms of contemplative practice is depicted in the Tree of Contemplative Practice . In this model, the roots of the tree symbolize two foundational purposes of contemplative practice: increasing personal awareness; and cultivating a sense of connection with the divine . The branches on the Tree of Contemplative Practice are a way to categorize the forms of contemplative practice. For example, there are branches that depict practices involving movement , stillness , and creativity branches . There is notably overlap between the forms and desired outcomes of contemplative practices. The focus of the current study, collective labyrinth walking with a shared intention, could be placed on the ritual/cyclical, generative, movement, meditative, and even activist branches. --- Labyrinth walking Labyrinths beckon practitioners to step onto a meandering, often unicursal path, patterned after sacred geometry, to embark on a metaphorical spiritual journey. Historians discovered that labyrinths have been used in many cultures for the last 2,000 years , beginning in Crete and spreading to most continents. According to historians, such as Jeff Saward, the earliest reliably dated labyrinths have been found in Southern Europe. These labyrinths were typical of a classical style with a series of seven concentric pathways surrounding a central goal. In the last 30 years, the ancient practice of labyrinth walking has been revived through the work of Artress ) among others. Since then, this practice has grown in popularity as an adjunctive process to various types of psychotherapy and as a spiritual practice . There is evidence that individual labyrinth walking serves to quiet/focus the mind, foster peace, reduce stress, and improve physical, emotional, and spiritual health . Little is known, however, about how these benefits translate to community or social outcomes which is one of the significant aspects of the current study. Modern labyrinths are found in religious and secular settings such as churches of all faiths, universities, hospitals, prisons, community centers, and backyards, among other locations . Although modern labyrinths come in many forms and designs, one of the most familiar is the 11-circuit Chartres style labyrinth, named for the medieval pavement labyrinth found in the nave of the Chartres Cathedral in France. Another well-known modern labyrinth was constructed in the nave of Grace Cathedral in the United States and is a replica of the Labyrinth at Chartres. A third notable labyrinth is a "green rooftop labyrinth" at the American Psychological Association headquarters in Washington, DC, USA.1 This labyrinth was designed to provide a place for employees and visitors to reflect and as a means for reducing pollution in local waterways. Other forms and designs of modern labyrinths include physical labyrinths in the ground, virtual labyrinths, finger labyrinths, paper labyrinths, and more. There are no financial costs for walking a labyrinth which make it a potentially scalable contemplative practice. Labyrinth walking reaches the far corners of the technological spectrum from low-tech to high-tech. An example of a low-tech labyrinth is when a person draws a labyrinth design in the dirt with a stick, then walks it. Another example of a low-tech labyrinth is a paper handout with a labyrinth printed on it whereby a person can "walk" it by using their finger to trace the pattern. An example of a high-tech labyrinth would be the vision of Sandra Wasko-Flood in Angel Fire, New Mexico. Her prototype for a PEACE labyrinth is projected onto the floor by liquid crystal display and can be modified based on desired labyrinth design, color, size, and music. Examples of other options for labyrinth walking are using a finger type labyrinth on an app for a smartphone, carved finger labyrinths in wood, and labyrinths illuminated by solar power for walking at night. There are also labyrinths made from recyclable materials , recycled bottle glass, old pottery, used shoes, tires) and natural materials which allows for the production of eco-friendly labyrinths. The Labyrinth Society 2 has curated a useful downloadable resource on research and presentations on this contemplative practice. --- Collective labyrinth walking with a shared intention Most of the research on labyrinth walking to date, has examined this practice from an individual or more Western perspective. In the current study, we have focused on collective labyrinth walking with a shared intention which involves 3 or more people walking a labyrinth or labyrinths in solidarity for an agreed upon purpose or reason. This form of labyrinth walking can occur locally or non-locally . Shared intentions must be of a prosocial nature and about improving circumstances for an identified people group that the collective is concerned about. A short meditation is usually conducted before beginning a collective labyrinth walk. This meditation is aimed at unifying the hearts and minds of the practitioners who are walking. Practitioners are instructed to state the shared intention silently or out loud before they step onto a labyrinth to walk the path toward the center or "heart, " also called the rosette. Upon arriving at the center of the labyrinth, practitioners are encouraged to repeat the shared intention again verbally or silently to themselves. In the center, practitioners are asked to begin to feel the emotion of the intention as if it was already completed and to release it. The practitioner remains in the center as long as they want to and walks the path out of the labyrinth when ready. At this point, the practitioner is advised to be present to what is being received in their mind or heart and receptive to any ideas, feelings, and/or sensations that emerge without analyzing or judging. After the walk, it is recommended that a journal be used to write about what happened during the walk. The practitioner should be encouraged to recall their experience, noting any changes in their thoughts, feelings, and sensations. Possible reflections include how they felt after "releasing" the intention in the center of the labyrinth, as compared to before releasing it, and new insights or 2 https://labyrinthsociety.org ideas they had stemming from their collective labyrinth walking experience. Individual journaling is for personal reference and for sharing when a collective comes together to discuss what came up for each member during the walk whether in-person or online. --- Materials and methods The project was reviewed by the Institutional Review Board of Baylor University . The data was collected through an anonymous online questionnaire. No personally identifiable Research Health Information or Personal Health Information was collected. --- Research design and sampling strategy A convenience sampling strategy was employed in this study and data collection occurred on World Labyrinth Day which was held on 1 May 2021. Inclusion criteria were: participated in a labyrinth walk on World Labyrinth Day 2021; signed up for the research study before WLD to receive instructions; age 18 or older; English reader; and willingness to complete an anonymous questionnaire online. Exclusion criteria were no internet or cellular access to complete the questionnaire associated with the study. --- Procedure Recruitment The Legacy Labyrinth Project , a community organization dedicated to the practice of labyrinth walking and sponsor of the study, was responsible for recruitment and worked in close collaboration with the researchers on this study. Information about the study was distributed through social media outlets, email, study flyers, website announcements, word of mouth, and presentations. Other well-known labyrinth organizations supported recruitment efforts such as The Labyrinth Society , Veriditas3 , and The Australian Labyrinth Network. 4 The organizers of World Labyrinth Day were supportive of the research study and provided outlets for recruitment. --- Instructional resources The Legacy Labyrinth Project developed two instructional videos for the study which were emailed to participants the day before WLD 2021. The goal of the first video was to teach participants a brief meditation to becoming more calm and more focused before participating in collective labyrinth walking. The goal of the second video was to teach participants how to walk a labyrinth with a shared intention based on the work of McTaggart . Participants also received a video developed by The Labyrinth Society on how to walk a labyrinth safely during the COVID-19 pandemic . --- Instructions for participating in the study There were three steps for practitioners to complete in sequential order in this study. First, they were asked to do the brief meditation. Second, they were asked to reflect on the intention below that was developed by a committee of expert practitioners who served in advisory capacity for the study. In this year of suffering and uncertainty around the world, my intention is to walk a labyrinth with others on World Labyrinth Day to receive insights that can influence change. Finally, participants were asked to walk a labyrinth of any kind, wherever they were in the world, before completing an online questionnaire within 48 h of doing their labyrinth walk. There were no restrictions on the location of a practitioner's labyrinth walk or the form of labyrinth they utilized . However, practitioners were asked to walk labyrinths on the same day around 1:00 PM in their respective countries and regions with the shared intention noted above. --- Questionnaire A link to complete an anonymous questionnaire was sent out to practitioners to complete after their collective labyrinth walk. The questionnaire took approximately 15-30 min to complete. There were no financial or in-kind incentives for participating in the study. No electronic data on location of participants or other electronic identification was tracked. --- Data collection An online data collection tool was utilized to collect qualitative and quantitative data . The measures for this study were: a short investigatordeveloped demographic questionnaire which included questions about experience walking labyrinths as well as other information about each practitioner's labyrinth walk; three open-ended narrative questions about practitioners' experience collectively walking a labyrinth with a shared intention; and three standardized self-report measures. For the current article, we report only qualitative findings from the three open-ended questions. Practitioners were invited to complete the questionnaire online within 48 h of collectively walking a labyrinth with a shared intention on World Labyrinth Day 2021. The questionnaire could be taken on a computer or on a smartphone. Responses went directly to the academic research team for analysis. The data was housed on a password protected server. --- Measures Qualitative data was obtained through three open-ended questions. Participants were asked: to share any insights they received during their collective labyrinth walk with a shared intention, if any; what they envisioned as a plan for following up on their insights, if at all; and their general experience participating in a collective labyrinth walk with a shared intention. --- Data analysis To gain a deeper understanding of the themes emerging from the narratives of practitioners, interpretative phenomenological analysis was utilized. This qualitative research methodology is advantageous for fostering examination of a person's inner-most deliberations while making interpretations of the meaning of their lived experiences . It is particularly well-suited for learning about complex emotional and spiritual experiences . The narrative data from this study were uploaded to NVivo for analysis. Three members of the research team gained insight into the data by individually reading participants' narratives multiple times, making notes, and then developing initial codes that represented common words or sentences derived from the data. The team discussed the merits of each code and whether to retain, refine, merge, or eliminate codes over four team meetings. The agreed upon codes were grouped into "meaning units" that captured the essence of participants' lived experiences. These codes and their definitions served as the basis for forming themes. To reduce bias, two members of the team, without personal experience with labyrinth walking, independently conducted line-by-line coding of the narratives for analysis. A third team member, who had experience walking labyrinths, served as an arbiter in case there was disagreement between the two primary coders. The team conducted four additional meetings to process insights from individual analyses and to triangulate the data . Next, the team interpreted the data around the themes which gave meaning to what practitioners shared about this collective labyrinth walk. This iterative process of text-to-code and code-to-code revision was conducted to increase the trustworthiness of the findings . Finally, a committee of expert labyrinth walking practitioners provided input on the interpretation of the themes. --- Demographic characteristics of participants A total of 461 practitioners completed the online questionnaire. Although most were from the United States, practitioners from 19 countries were represented. Most practitioners were experienced labyrinth walkers with 96.3% having previously walked a labyrinth. The average age was 63 . Most practitioners selfidentified as "Caucasian or White" although a small percentage considered themselves to be a "person of color" or did not identify with any of these categories. Most practitioners self-identified as "female" , with fewer who identified as "male" , and the remainder preferring not to answer this question. There were people from all the world religions, persons who considered themselves spiritual and not religious, and persons who considered themselves as agnostic. 10.3389/fpsyg.2023.1232784 --- Findings Three predominant themes emerged from practitioners' narrative accounts of collectively walking labyrinths with a shared intention: a sense of connectedness ; qualities associated with a "transcendent" experience; and insights into ways to cultivate social and communal flourishing. The themes are presented below in order of prevalence in this sample of practitioners. --- Theme 1: A sense of connectedness Practitioners reported experiencing multiple forms of connectedness. Subthemes for connectedness were: intrapersonal connectedness ; interpersonal connectedness ; transpersonal connectedness ; and connectedness with the labyrinth they were walking. --- Intrapersonal connectedness For some practitioners, collective labyrinth walking with a shared intention led to a sense of feeling more integrated as a person. For example, a practitioner shared, "This experience brought to the that I had to put my wellbeing first in my life." Another example from a practitioner was, "I felt my heart open more and had a sense that my soul had purpose. My best days are in front of me. The Universe has my back." This theme was important given that most practitioners in the study had reported feeling distressed and disconnected from themselves because of the COVID-19 pandemic and quarantine initiatives. --- Interpersonal connectedness A heightened sense of interpersonal connectedness was shared by practitioners during their labyrinth walk. The forms of interpersonal connectedness reported in this study were to family, friends, deceased loved ones and ancestors as well as fellow labyrinth walkers who were participating in this experience, practitioners' local communities, and people around the world who were experiencing suffering as a consequence of the pandemic. --- Friends and family Interconnectedness to friends was demonstrated in the following quote by a practitioner, "I felt a greater connection with the many friends and other people to whom I sent love and good wishes to even though we were not together ." Another example was, "As I rounded the final bend and I noticed other walkers already in the center of the labyrinth, I was overcome with a rush of emotion. I felt joyful and grateful. Somehow, I KNEW that what I was experiencing was shared by others." Still another shared, "I was filled with joy and gratitude at being reunited on the labyrinth with four dear friends. It energized me to think that we, along with hundreds around the globe, were united in a common experience, many of us holding the same intention." This level of perceived connection with others was notable given that many practitioners reported feeling physically and socially isolated and disconnected from family, friends, and other persons prior to their labyrinth walk. --- Deceased loved ones and ancestors Connectedness with deceased loved ones and ancestors were often reported by practitioners. For example, a practitioner expressed, "I had a sense of anticipation and deep connection with my deceased parents." Another practitioner shared, "Yesterday was my late Father's 105th birthday. My heart was deeply moved when I became aware of his presence." Another expressed having a sense of connection with deceased members of their church, "As the pastor here. . .I don't know many of those buried in our memorial garden, but I certainly know their heirs. It was moving to connect with those folks while walking and recall the stories that I've heard and offered prayers for their eternal rest and peace for their descendants." The community, other labyrinth walkers, and the world For some practitioners, a sense of connectedness to their communities and the world was experienced. For example, a practitioner shared, "The wisdom I received is how to deal graciously and constructively with the tension among people in the community where I live about the safety measures that are required for the pandemic." Another practitioner shared, "I immediately felt attuned with all of the other labyrinth walkers today even though we were not in the same place." Still another participant wrote, "I felt connected to everyone during these challenging times." --- Transpersonal connectedness In this study, we defined transpersonal connectedness as feeling connected to something larger than oneself. Transpersonal connectedness most often had to do with feeling connected to the divine or a higher power or something metaphysical . Close to two-thirds of the practitioners' narrative responses suggested that they experienced a transpersonal connection. For instance, a practitioner shared, "I felt peace, connected to God and encouraged that people all over the world were walking the labyrinth as one." Another shared, "The connection with Spirit is strong, even in these seemingly difficult times." Another shared, "I felt such a connection. . .to the 'fierce and tender' love of the Divine moving through me. . . ." Another form of transpersonal connectedness reported by practitioners was to the Earth or Nature. For example, a practitioner shared, "Each inward breath brought me a sense of peacefulness that came directly from the Earth itself." Another practitioner shared, "I was filled with gratitude and connection to the Earth and others walking that day." Another wrote: "I felt a deep love and forgiveness for all of Creation." Nature or earth-based connections were experienced viscerally by some participants. For example, a practitioner explained: "My feet and legs were vibrating with Earth energy. . .it was incredible. . .the connectedness." Another participant shared: "I liked very much the connection with the Earth. I could feel my own roots going down in the earth as I walked this geometric figure ." --- Connection with the labyrinth A sense of being connected to the labyrinth was reported by most practitioners. A poignant example of a labyrinth connection was shared by a participant, "I experienced a deep connection to the Now and the incredible power of being within the center where I felt others across the world standing." Another participant shared, "I had a dream last night. . .that connected to the last petal today. That last petal is often very quiet for me, even today but it was also very strong." Labyrinth connections were imbued with meaning and healing for some as expressed in this quote, "The experience today, connecting with a complete stranger on a mainly empty shoreline, reaffirmed my love and commitment and connection with the labyrinth as a power and place and source of healing." Another shared, No matter the type of labyrinth or the form of the labyrinth, they all connect to the energy of the labyrinth. I really sensed this today. --- Theme 2: Collective labyrinth walking as a transcendent experience There are several qualities that may present when a person believes they have had a transcendent experience. These qualities are a sense of transcendence, ultimacy, boundlessness, connectedness , and positive emotions . Any of these qualities can emerge singularly or simultaneously during a transcendent experience. Below we describe practitioners' experiences during collective labyrinth walking with a shared intention. --- Transcendence Transcendence, may be described as the perception of having been a part of something bigger than the self that goes beyond one's ordinary day-to-day existence. A sense of transcendence may occur when a person believes they have encountered a deity or deities , although transcendence occurs outside of religious connotations. An example of transcendence from a practitioner's narrative was, "I felt very expanded and truly connected to something bigger than myself." Another was, "My experience was a transmutation of energy that sent ripples out from me. . .into the cosmos. . .it was much bigger than me." --- Ultimacy Ultimacy may be described as the perception that an experience was "really, real" or revelatory of a deeper truth . An example from a practitioner narrative was, "I felt the sky, a glorious azure. . .I was aware of all the labyrinth walkers around the world. I felt the connection, even though we were walking in different time zones. . .I felt privileged to be able to participate. I felt fully alive and present ." --- Boundlessness Boundlessness may be described as involving the perception of moving beyond the limits of ordinary time and space. It is a perceptual shift away from Chronos time to Cairo's time . An example of boundlessness from a practitioner narrative was, "I lost track of time and space and had a deep sense of calm walking ." Another practitioner shared, "Upon entering the labyrinth, it felt like time wasn't important. . .I had stepped out of the normal confines of time and space." A third example from a practitioner's narrative was, "This felt like an open day. . .there were no barriers, if only for a moment, between that which was, that which is, and that which will be." --- Positive emotions A person may experience a range of positive emotions during a contemplative practice. For example, emotions such as uplift, awe, humility, mystery, gratitude, joy, peace, and compassion, among others, may be classified in this way. In this sample, the most frequently endorsed emotion was gratitude, "I found myself a bit weepy with a deep sense of gratitude ." The emotion of uplift is reflected in this practitioner's quote, ". . .I felt lifted up out of my body with dignity and determination and out of the sadness I had been experiencing because of COVID." Peace was another frequently endorsed emotion as shared by a practitioner, ". . .I had an overpowering sense of peace envelope me." Joy and a sense of release was experienced by a practitioner, "I stopped and looked down to see the labyrinth shimmering in dappled light. . .I could almost feel the heat emanating from the surface. It only lasted a few minutes, but oh. . .the joy and release and relief I experienced." Multiple positive emotions were experienced simultaneously during collective labyrinth walking with a shared intention as reported by a practitioner, "I felt a deep sense of gratitude, love, and peace from myself for others." --- Theme 3: Compassion for action Compassion for action was the third theme emerging from practitioners' narratives of their experience in this study. This theme involved an increased level of awareness of the suffering other people might be experiencing as a consequence of the COVID-19 pandemic, a sense of compassion, and a desire for action. Increased awareness of the potential suffering of others is demonstrated in this quote from a practitioner, "I gained insights about addressing the HUGE suffering so many are experiencing." Bettering oneself was regarded as an essential component of compassion for action by some practitioners as expressed in this quote, "I will continue with my efforts to bring healing to myself and others through meditation and mindfulness and labyrinth walking with compassion." Another practitioner echoed a similar sentiment, "Healing the earth needs to start with me." Several practitioners reported that they were planning in engaging in direct action after receiving insights from collective labyrinth walking. An example of this sentiment follows, "I work with a group called . We meet buses coming in from to offer a small packet of food and water to asylum seekers. We feel it is important to welcome these seekers with small practical offerings. Today's walk encouraged me to continue with this." Another practitioner shared a desire to translate their insights from their collective labyrinth walking experience into the actions needed for planting a community garden to address food insecurity. This practitioner went on to explain, "I am involved in helping finish this labyrinth garden and caring for it, in a community project. . . I'm hoping to coordinate an event to showcase the gardens on the South side of my town which was historically red-lined." Another practitioner shared, "I am very concerned about the children all over the World who are being deprived of a joyous childhood and receive limited education." This practitioner goes on to say, "I plan to do something about this now that I am aware of my heart." Collective labyrinth walking with a shared intention was viewed as a form of non-traditional or spiritual activism by some practitioners as reflected in the following quote, "I will continue to speak out against injustice, will protest, and walk labyrinths for the good of others." Another practitioner remarked, "As I prepare to retire. . .I will continue to do my justice work and will be able to hold sacred space to encourage other people who are doing the frontline work." The idea of collective labyrinth walking with a shared intention being a form of prayer was often reported as demonstrated in a practitioner quote, "I will include water in my prayers while I walk labyrinths and share its importance with others." The subtheme of strengthening relationships among diverse people was expressed by practitioners. For example, a practitioner shared that they had received the insight that they needed to be "working toward creating peace among the people of the World." Another practitioner expressed, "I plan to include greater inclusivity in thought and engage in conversation with a more diverse group of people. . .I am concerned about what happens when societies get too comfortable and complacent. . .when change only incorporates one point of view." Another shared, "There is a need for the ongoing engagement and dialog around the impact of Colonization on First Nation people and movement for reparations. I recognized this during my labyrinth walk today." --- Discussion and implications The current study explored individual responses to the social contemplative practice of collective labyrinth walking with a shared intention within the context of the COVID-19 pandemic. Findings suggested that the practice of collective labyrinth walking with a shared intention can lead to a sense of connectedness through a transcendent or sacred experience that may spur insights and ideas for addressing human suffering with compassionate action. Practitioners, in the study, reported experiencing various forms of connectedness during their collective labyrinth walking experience . This finding is particularly salient in the context of the COVID-19 pandemic which resulted in a sense of isolation and loneliness for many persons around the world. Each form of connectedness could be present on its own or several forms of connectedness could present at the same time in each practitioner's experience. Likewise, the qualities of transcendence, ultimacy, boundlessness, interconnectedness, and positive emotions were cultivated through collective labyrinth walking with a shared intention which expand the work of Pargament et al. . In a systematic review on labyrinth walking, Davis reported that four out of seven people experienced positive emotions such as peace when walking a labyrinth individually. The current study expands these findings to the experience of collective labyrinth walking with a shared intention during an international crisis. This collective labyrinth walk cultivated a sense of peace, calm, compassion, relaxation, and increased awareness within a community context. This finding is particularly notable in that the practitioners in our study had been experiencing stress, anxiety, and trauma due to the COVID-19 pandemic and related concerns. The experience of collective labyrinth walking with a shared intention may have served to regulate emotions for the participants in the current study in addition to expanding their awareness. Although we did not compare people walking with the same intention to those who walk labyrinths with the goal of simply seeing what emerges, we believe that collective labyrinth walking with a shared intention may amplify positive emotions which warrants additional research. This finding provides evidence of the value of labyrinth walking as a social contemplative practice. It suggests that collective labyrinth walking with a shared intention may be a practice that can contribute to emotion regulation during disasters such as the COBID-19 pandemic. Contemporary contemplative practice may evoke radical shifts in the self and perception of the world, leading to actions that may benefit humanity and the earth. Among the most renowned contemplatives are Thomas Merton, Trappist monk and peace activist; Dorothy Day, social activist and co-founder of the Catholic Worker Movement; Howard Thurman, principal architect of the non-violent civil rights movement and mentor to Martin Luther King, Jr.; Anglican Bishop Desmond Tutu, Anti-Apartheid and human rights activist; and Thich Nhat Hanh, Buddhist monk and peace activist. These are individuals who have taught us that contemplation can foster justice and action . In this study, we verified that this mindset could occur through the practice of collective labyrinth walking with a shared intention. One branch of The Tree of Contemplative Practices is labeled "activism" and includes practices such as "taking trips to sites of social justice activity, working and volunteering for social causes, attending marches and vigils, and bearing witness" . Our findings suggest that collective labyrinth walking with a shared intention can also be a form of contemplative activism where deep insight is cultivated to address the social issues of our time with greater clarity and resolve. Indeed, like other contemplative practices, collective labyrinth walking with a shared intention may serve to cultivate the inner tools for disrupting inner logic system that are based on oppression and bias so that we can see ourselves, others, and the world more clearly . Expanded awareness and vision through this inner work can be transformed into the outer work of supporting social and structural change . Findings from the current study supported prior work on the use of contemplative practices for social justice concerns . The form of activism present in collective labyrinth walking is more subtle in nature when compared to more wellknown or traditional forms of activism such as marching and protesting. Instead, the form of subtle activism we observed in collective labyrinth walking with a shared experience emphasize insight, connection with others and creativity . The outer work of social change begins with inner soul work . To date, labyrinth walking has primarily focused on inner work . The current study expanded this focus to labyrinth walking for communal and cultural flourishing. Further research is needed to explore the ways collective labyrinth walking can be used as a form of contemplative activism. --- Limitations This study was a community based participatory research study. A CBPR approach views all stakeholders as equal. For this project, stakeholders included the sponsor, an expert practitioner advisory board, the labyrinth community, and the research team. Efforts were made to engage stakeholders at every point in the research process to co-create and shape the project by contributing expertise, sharing in decision making, and taking ownership of the project. This form of research is aimed at increasing knowledge and understanding of a given phenomenon for the purpose of integrating that knowledge in a manner that benefits the community. Inherent in this form of research is the potential for bias as compared to a tightly controlled researcher-initiated project. Although there were participants representing 19 countries, most of these participants were from North America, predominately the United States. Thus, it is not known whether our findings are generalizable crossculturally. There was also a lack of gender and age diversity with most participants being women in mid-life or older. Therefore, additional research is needed with younger cohorts of practitioners and those who identify as male to with different genders fuller understanding of the impact of practitioners. The data in this project was collected at one time and a longitudinal approach is highly recommended. --- Future research Future research on collective labyrinth walking with a shared intention could take several directions. For example, there is a need to understand the differences between collective labyrinth walking with a shared intention as compared to individual labyrinth walking without a shared intention. These are both different ways that labyrinth walking can be utilized as a contemplative practice and it is not yet clear how an individual versus a social form of labyrinth walking differs in regards to practitioner experiences and outcomes. Second, comparative research could be conducted between collective labyrinth walking with a shared intention and other well-known practices such as mindful walking with compassion. Although both contemplative practices involve movement and compassionate intentions, they are distinct forms of contemplative practice. It is known that labyrinths were constructed based on what has been referred to as sacred geometry. It would be interesting to determine if labyrinth patterns can amplify practitioners' experiences as compared to other contemplative walking practices which do not hold a similar structure. Quasi-experimental and experimental designs are recommended for further research comparing practices. Another important area for future directions research is to better understand the mechanisms by which collective labyrinth walking with a shared intention effects individual and social flourishing. For example, the question of possible mediators and moderators by which collective labyrinth walking with a shared intention works is an important step in this line of research. We recommend the use of objective indicators pre-and postcollective labyrinth walking experience to better understand this phenomenon. Ideally, data collection could occur before, during, immediately after, and longitudinally on individual and collective flourishing outcomes. Finally, research on the effects of walking labyrinths in a collective over time with a shared intention should be examined. For example, what do practitioners report when they participate in collective labyrinth walking with a shared intention over more than one session? Do results change if different intentions are utilized by a collective? Future research should examine not only individual responses but also group responses such as social cohesion between practitioners who are engaging in collective labyrinth walking with a shared intention over time. --- Conclusion In conclusion, practitioners shared that their experience of collective labyrinth walking with a shared intention allowed them to gain a contemplative posture of peace and calm leading to insights and motivations for positive change during an international crisis. A poignant quote from a participant echoes this sentiment, "The labyrinth walk reflected the life we are in now. . .IN this case the wondering about how to come out of this pandemic. The intention made me feel into all the aspects I need to let go of myself to be able to be the intention. . .of making positive change." This study highlights the relevance and possibilities of this integrative contemplative practice for cultivating a sense of connection, at multiple levels, and compassion which could potentially bring people together for action that may affect positive change. --- Data availability statement The datasets presented in this article are not readily available because the data set is confidential per the Institutional Review Board . Requests to access the datasets should be directed to JM, [email protected]. --- Ethics statement The studies involving humans were approved by the Baylor University IRB . The studies were conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study. --- --- --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
practitioners reported qualities associated with "transcendent" experiences during this experience (i.e., boundlessness, ultimacy, transcendence, connectedness, positive emotions); and (3) practitioners had insights for compassionate action. Discussion: Findings suggest that collective labyrinth walking with a shared intention can contribute to individual and group flourishing during times of distress. Quasi-experimental and experimental research designs are needed to build on this exploratory developmental research and are described in this article.
Introduction Violence against women is a complex and multifaceted event and the result of cultural, political and religious construction, based on gender gaps 1,2 . Such a structure naturalized and legitimized power asymmetry, justifying men's domination over women. As a consequence, the most common type of violence against women is intimate partner violence, which occurs among people of different ethnic groups, religions, economic and social classes 3,4 . Battery includes rape, physical, psychological, financial abuse, and can sometimes culminate in the death of abused women 5 . In this setting, intrafamily violence is a type of abuse to which many women are subjected, originating from family members, regardless of whether or not the perpetrator is sharing the same home 6,7 . It is observed that violence translates the social construction of gender that determines the hierarchical relationships between men and women, through the delimitation of their culturally-rooted social roles 8 . It is imperative to think of the figure of the perpetrator, the victim and their marital relationships, above all, in the face of the naturalized association between violence and masculinity present in the imaginary of society 3,9 . The following research question was elaborated through the gender asymmetry built up in family relationships between men and women, as well as the configuration of men as it emerges socially: What are the social representations of men's aggressive behavior, from the perspective of women in domestic violence situations? It is believed that the Social Representation Theory will provide, from the experiences of women in situations of violence, the encounter with male perpetrators and the understanding of their aggressive behavior. Thus, this study aims to analyze the social representations of men's aggressive behavior from the perspective of battered women. --- methods This is an exploratory and descriptive study, with a qualitative approach, based on Social Representation Theory. Representational studies are defined as a set of assumptions, explanations and concepts that originate in everyday life through the communicative process among individuals 10 . Adult women who were under the protection of the Reference Center located in the Munici-pality of Natal, Rio Grande do Norte participated in the study. Regarding the support network for women victims of violence, the municipality has Women Assistance Police Stations , Legal Assistance Centers/Attorney General's Office, public services such as the Citizen's Reference Center and Home-Shelters. This service was chosen because it is the primary gateway for women in a situation of domestic or family violence in the municipality, besides relying on the performance of multidisciplinary team providing the necessary psychological apparatus, considering the data collection's specificities. The intentional sample was selected using the inclusion criteria: adult women who suffered intrafamily violence; declaring affective or kinship bond with the perpetrator; male perpetrated battery; showing psychological and emotional conditions appropriate to reality. And, as exclusion criteria: cases with aggravated emotional and affective conditions, fear and severe threat, and risk of death of relatives of the victimized woman. The sample consisted of 20 women, ranging from 31 to 40 years , white , in common-law marriage , with incomplete elementary school and housewife . Data were collected from March to June 2013 through a free narrative, with the guiding question: "Tell me about violence and your experience with the perpetrator." Based on the answers obtained, a database was prepared that was submitted to the software Analyse Lexicale par Contexte d'un Ensemble de Segments de Texte version 2010. This software allows performing lexical analysis of the content of a text through specific qualitative and quantitative techniques, grouping semantic roots, generating the elementary context units and the ascending and descending hierarchical classification expressed in each class, considering the occurrence, co-occurrence of words and their textual function 11 . The study in question was approved by the Research Ethics Committee of the Federal University of Rio Grande do Norte . The excerpts from the study collaborators' statements were identified by the names of prominent female characters in world cinema classics. --- Results The material obtained by the ALCESTE software processing achieved approximately 58%, indicating relevance for representational studies. Of the 177 UCEs selected, the software generated three distinct and correlated classes. Class 2 prevailed in the corpus content material originated by the participants' statements, followed by Class 1 and Class 3 , which had an existing direct proximity relationship. In this step of parametric class analysis, the software establishes its parameters of ascending and descending classification type 10 . Three thematic categories were established from the analysis and interpretation of the three classes elaborated by ALCESTE. Class 2 corresponded to thematic category 1: "Women imprisonment, with predominantly excerpts from statements about resignation and the feeling of imprisonment of women victims of intrafamily violence. Class 3 focused specifically on violence itself and gave rise to thematic category 2: "Violence and its meanings". And, in Class 1, the semantic space created by the collected testimonies expressed the ideas of denunciation and rupture, corresponding then to thematic category 3: "Breaking with the violent cycle". --- Women imprisonment Thematic category 1 revealed the subjective world of women through the concealment of violence and self-imprisonment for the sake of marriage, children and husband/partner, enhanced by gender inequalities in the relationships between the couple. Women giving in as a way of keeping their ideal family/marriage model, low self-esteem and their submissive condition in the face of domestic violence is evidenced. --- During five years of marriage, I lived to take care of the house, our daughter, and him and also working outside the home. And I could not even manage my own money; it was he who said what to do. My life amounted to this. I was consuming myself; I felt overly exhausted; I did not enjoy being married anymore. He would say, "Shut up; otherwise, I'll spank you . You are wrong; I'm always right ". Every relationship must have respect, something he does not have for me. I do not think I loved myself to be so submissive like that. He would say, "You have to perform your duty as a wife; you are my woman ." It was as if I were an object, a property of his. Refusing to have sex with a husband/partner denotes a counter-power, causing the emergence of violence, even rape, as shown in the statement below: I could never say "no" : No, I don't want to have sex with you! That was already reason to be battered. --- Violence and its meanings Thematic category 2 focused on violence itself and its meanings. In this scenario, the interpersonal conflicts experienced in situations of violence reveal a counterpoint: men shift from idealized husbands to the figure of perpetrators. Violence, to me, is punching, slaps, spanking, blows. He only hit me once; I was paralyzed, astonished. I went to the DEAM and filed a complaint. --- Violence is impunity against women, because, besides being fragile, women are powerless against men. For example, he called me a prostitute, saying that I had an affair with another man because I have not had sex with him for a year. And This scenario comprised the conflicts experienced by women between the ideal husband/ partner versus the figure of the perpetrator. Men have linked a negative, obscure meaning, whose figurative constructions for women who suffered the violence anchor in the idea of a monster, executioner, Nazi, persecutor. For starters, I had never had a relationship, I have always been someone inclined to studies, and this was my first experience. I created expectations, I dreamed about the relationship, with the construction that started. So when the assaults began, it was a massive impact for me. Seeing this different world, the first thing I thought was to end my life. --- Today I see him as a monster, an executioner. As if he were a Nazi who took me to a concentration camp and wounded me, forcing me to do things I don't want to do. This person means danger to me; I do not trust him anymore. --- Breaking with the violent cycle The thematic category addressed the denunciation, the process of coping by battered women, ranging from vulnerability to resilience. Narratives experienced, where the symbolic constructions of women on men's aggressive behavior are observed. Factors such as fatigue, acceptance of the broken relationship and the suffering of the child were the starting points for the reconstruction of a new history, from the complaint filed at the CRCM. --- I lived moments of sadness and suffering; I just faded. I got tired of all this, and I decided to start over by writing a new story. This is not what I dreamed of marriage and family; I bore beyond my strength, now I will file a complaint and say enough is enough! . I cannot stand being beaten up and my son watching this. I have a son who did not ask to come into this world, but then, I cannot submit him to a life of sacrifice and suffering. I lived with him for three years and all this time I suffered violence, I endured in silence until I got pregnant. It was then that I decided to file a complaint, to put an end to that situation. I'm going to try to have another life with my unborn child. When women left the condition of battered and submissive wife/companion condition to assume the status of mother, they were encouraged to break with the cycle of violence, extreme violence, presence or birth of the child. When they realize this condition, they start anew with a desire for change. Thus, a path of struggle and search for support begins. I arrived here at the center very depressed and suffering, and you treated me so well that I felt better here than at home. I used to think about death before, I saw death many times, I did not eat anymore and I lost weight. I had severe health problems, but once I got here, I wanted to grow professionally, to be happy with my children. I know I can, I know we deserve . Here I found my self-esteem, which I lost amid so much suffering. It's been so long since I wrote, can I write some more? . One understands that being with the other in social support networks allowed the continuity of the process of breaking with violence and the perpetrator. I dream of a happy, well-organized house, with all my things in place. I wish peace to live in the family with my children. God willing, I will succeed. --- God willing, I know I can. My children and I will be very happy. I am already studying; I have learned to drive. Now I have my job and I live my life intensely. Ah! I want to get someone for me, too. In the confrontation process, the women participating in this study were totally into breaking with the violent cycle through judicial separation or protective measures. He's a nobody. Today I ignore everything he does. --- It's even strange to look at him today and see that I don't feel anything at all for him. Neither anger nor love. Today he means nothing to me. He is worthless. The lines also refer to the aggressive behavior coming from family constructs that perpetuate in their intimate relationship with their companion, and perpetrator: I see that there was a construction within the family itself. His behavior is the same as his mother's, always blaming his father to try to extricate himself from responsibility. So I think he's a disturbed person. I believe that this lack of family education, this unstructured family, the suffering he endured, has influenced his attitudes and behaviors. In his family, the father was very aggressive with his mother and his sister, but not with his sons. Even when we were married, he treated me like his father treated his mother. He reproduced his father's attitudes and behavior as if he were my master. Women relate aggressive behavior to two meanings, addiction caused by alcohol and drug abuse, and personality/behavior disorder, such as mental illness. --- My husband's father was very aggressive with his mother and he also drank a lot. He was always under the influence of drugs, especially marijuana and cocaine. --- It's as if he has a dual personality. I hope he can find out the cause of this aggressive behavior. I believe that the perpetrator can recover. He was a different person when I first met him; he was a homely person, evangelical, but when he started drinking, he destroyed everything inside the house. The configuration is of illness or a sick individual, due to alcohol and drug abuse and personality disorders, emotional instability against a contrariety. Some statements strengthen this thinking: His father spanked him a lot. --- His father was very violent with his mother and daughters. Not the male children. He could not be contradicted. He exploded with just about anything. Through the categories and lines mentioned, a figure was elaborated illustrating the social representations of male aggressive behavior and its network of meanings, from the perspective of the battered woman . --- Discussion The social representations of male aggressive behavior, based on the experience of the women in situations of intrafamily violence, are anchored in the social roles attributed to men and women, who grant to men the power in the relationship, with a figure of provider, virile, and a submissive role to women. They also reflect family models organized based on patriarchalism and gender inequality 8 . These differences point to patterns of identity, in which both the subject and the object investigated identify what it is "to be a man and to be a woman" before the social images witnessed in the family, and they reinforce the idea of a dominant model of masculinity 2,3 . It is understood that this experience is constructed throughout someone's lifetime, within experienced objective conditions, and is continuously changing from how the same sex and the opposite sex relationships are experienced, both in public and private space 6 . That is to say, these dynamics seized in the middle of the sociocultural relationships correspond to the images and meanings of masculine and feminine, conforming both women in a situation of intrafamily violence, like aggressive husbands/companions, their masculinities and femininities 2,4,8 . Violence denies women autonomy, the possibility of being subject, of building themselves up and of being able to have freedom in the relationship, insofar as the power relations materialize violence, because they objectify people and individuals 6 . One of the ways of coping and avoiding women in situations of violence is passivity, not as a form of acceptance, but as an appropriate decision-making process for a given situation 12 . The asymmetry of gender roles of being a man and being a woman in society is observed in the marital relationship. Thus, the desire of having and maintaining a family contributes to the position of submission and resignation of the woman herself 8,12 . This is when the woman allows her self-imprisonment. Regarding sexuality between the couple, women are deprived of autonomy, the right to decide, even on their body 6,9 . Thus, the marital relationship is marked by an asymmetrical power relationship, in which self-resigning women become vulnerable to battery, reinforcing the male dominance concept in men 13 . Besides the physical violence used by punching, slapping, kicking, shoving, among others, women experience cursing, insult and defamation. In other words, they suffer from psychological violence through emotional damage, lower self-esteem, acts that hinder full development or that may displease or control actions and behaviors, beliefs and decisions, through threats, embarrassment, humiliation, manipulation, isolation, vigilance, persecution, insult, blackmail, mocking, exploitation and impediment of movement or other means that cause harm to the psychological health and self-determination of the human being 14 . However, it may be unknown and invisible in the eyes of the battered woman because she considers it a normal and acceptable behavior within familiar patterns and is not perceived as battery 5,6 . In both situations, violence is used as a manifestation of the relations of men dominance over women, expressing a denial of the freedom of the other, equality and life. This inequality manifests as power asymmetry, weak submission to the strong, translating into ill-treatment 8,9,13 . It was observed that violence was not treated as a violation of the rights of women, which strengthens and even enhances the acceptance of male behavior in the face of the situations experienced as something that is part of the relationship between the couple. The conflicts experienced by women of the study are evidenced in coping with the limit between love and violence, the companion and perpetrator. Both sides intertwine in the lives of these couples, as an "endless game" that unites them and drives them away, keeping them in a constant tension that, contradictorily, is the main "link" of the marital bond and the violence endured, frustration, suffering and death as an escape. In these dynamics, different expectations projected on the other, myths and beliefs, constructions about gender relations and values about love and passion, marriage and family are confounded 3,6 . Breaking with this vicious circle occurs with facilitating factors such as women's attitudes, ranging from self-voidance and beliefs and expectations of their conjugality in years of humiliation or anger over an abused child to the perception of increased in violence and the imminent risk of death [13][14][15] . Understood as post-domestic violence resilience insofar as they can speak, expose their subjectivity from the traumatic experience and attribute a new meaning to the stored experience, and in doing so, it will be possible to change the meaning of suffering, and thus, overcome it 16 . Moreover, the narrative for oneself, about the trauma experienced, facilitates the attribution a meaning to what happened and reshape it affectively. This mechanism can be understood with a resilience factor, besides the narrative to the other. --- Conclusion The social representations of the aggressive behavior of husbands/partners from the viewpoint of the women participating in the study reflect the dominant masculinity, as well as the familiar constructs in which men were created. The meaning of power and domination in the marital relationship was assigned to men, reinforcing the dominant male model that minimizes women's figure, the idea of passivity, submission and victimization; such an asymmetrical relationship is identified as a possible violence-generating factor. The historical and social construction of intrafamily violence traverses a complex process of vulnerability and resilience such as that experienced by the group of women, sometimes characterized by the concealment or silencing of the victim in reporting their self-imprisonment, including in the face of suffering and pain, triggered by the rupture of the idealized image of the companion and the laborious process of coping with his aggressive behavior. Among the main limitations of the study were the type of research and the local coverage of the study, in part inherent to the very topic of intrafamily violence from women facing various biopsychosocial conflicts such as prejudice, fear, embarrassment, mental distress, among others. And findings point to the relevance of this work and future studies that denounce the problem Repetitions of behaviors and roles relatives at hand, fostering sensitization and reconstruction of concepts on gender ideology, as well as accountability, treatment and appropriate reception to the actors involved. --- Collaborations VKM Nóbrega participated in the study design, data analysis, drafting and critical review of the manuscript. JM Pessoa Júnior and EGC Nascimento participated in the data analysis and critical review of the manuscript. FAN Miranda guided the project, participated in data analysis and critical review of the manuscript. All authors approved the final version of the manuscript.
The scope of this study is to analyze the social representations of the male aggressor from the perspective of the female victim of aggression. It is a qualitative and representational study conducted, using free narrative as the data-gathering tool, with twenty women who were under the protection of the Reference Center in Natal in the State of Rio Grande do Norte. AL-CESTE 2010 software was used to analyze the textual data. Three thematic categories were developed for the purpose: i) The imprisonment of women; ii) Violence and its significance; iii) Breaking the cycle of violence. From the perspective of the female victim of aggression, the social representations of the behavior of the male aggressor are entrenched in the social role of males in the family and in society. In this way, it represents a model of dominant masculinity that in turn reinforces family structures and the repetition of roles.
Introduction The global spread of SARS-CoV-2 led the World Health Organization to declare a pandemic in March 2020. To slow down this transmission, many countries took strict socio-sanitary measures that have affected the lifestyles of millions of people and children, not being able to continue carrying out activities like the ones they did until confinement [1]. Thus, the pandemic caused by COVID-19 led to the establishment of a period of confinement, and families were forced to restrict movement and social contacts with the consequent risk of inactivity [2,3]. More than 90% of children were affected by the restriction of movement to curb the transmission of the new coronavirus that culminated in the closure of all educational and social activities [4], which significantly affected families [5]. Parental and family factors influence many aspects of their children's lives, including their level of Physical Activity [6]. The COVID-19 lockdown measures resulted in children and adolescents staying and learning at home [7]. With schools closed, the frequency with which parents conducted literacy activities at home with their children and the sociodemographic variables that influence this collaboration are unknown [8]. Confinement can have short-and long-term impacts on people's mental health and quality of life. Knowing what factors cause stress can benefit the development of strategies and resources for future situations [9,10]. The effects of COVID-19 containment measures on children's emotional and behavioral development are not sufficiently clear [11]. Therefore, the negative impact of confinement on the emotions and behavioral aspects of children highlights the need for strategic approaches, especially for those most susceptible due to environmental factors and pre-existing emotional problems [11]. Approximately 35.1% of the parents reported that the psychological health of their children was considerably affected. The most important concern was social isolation [12], as well as unemployment, the increase in family conflicts, the lack of opportunities for teleworking and the deterioration of the psychological health of the parents that can cause deterioration in the conditions physical and mental health of children and adolescents [12]. Since COVID-19 dramatically changed human social life, restrictive lockdown periods to curb the spread of the virus were found to particularly affect the psychological wellbeing of children and their families [13]. For its part, technological media are present in many homes establishing changes in social communication and lifestyle [14]; however, the COVID-19 pandemic has further highlighted the deep digital divide and the enormous challenge its education system faces in continuing to teach students during the lockdown [15]. Due to the above, this study was proposed to verify the influence of the educational level of the parents on the behavior of children aged 3 to 12 years during the COVID-19 pandemic, both in Ibero-American and European countries. The objective was to analyze the tasks to which children between 3 and 12 years of age dedicated their time. --- Materials and Methods --- Study Design and Participants For this study, a descriptive, comparative, cross-sectional design was used, with a single measurement for a single group. This study was conducted by the Universities of Jaén, Coruña and Granada. The sample consisted of 2316 children aged between 3 and 12 years . The sampling was for convenience, inviting families with children in the Early Childhood and Primary education stage to participate during the COVID-19 pandemic. Regarding gender, the distribution of the sample was homogeneous, representing 52.4% boys and 47.6% girls . Specifically, 54.7% of the sample represented Europe and 45.3% Ibero-America. However, Table 1 provides the distribution according to the countries that participated. --- Variables and Instruments A self-prepared questionnaire was used to record the sex and age of the children, the origin of the responses and the level of education of the parents . The questionnaire on Equipment and Use of Information and Communication Technologies in Households prepared by the National Institute of Statistics following the recommendations of the Statistical Office of the European Union was used to know the means and technological resources that families had at home during confinement, as well as the time of use, expressed in minutes, of children under 12 years of age. Due to the influence of lifestyle on indoor activities during confinement, parents indicated the time expressed in minutes that their children spent on daily activities such as PA practice, household chores, playing instruments, artistic activities, household chores, playing with the family, reading and playing freely. For the degree of psychosocial wellbeing, a Likert-type scale with 10 response options was used . The degree of happiness, energy, tiredness/fatigue, self-esteem and creativity during confinement was recorded, allowing the sum of the state in general to be established, as well as the mean values of a degree of positive and negative psychosocial well-being. --- Procedure Through the Google Forms platform, a questionnaire called "Boys, girls and confinement" was created. Electronic information was disseminated through social networks, in order to reach the population under study , as well as contacting various education professionals who had access to sufficient families to ensure good dissemination of the instrument. The questionnaire was activated during the various confinement periods established in Ibero-America and Europe. Out of a total of 2598 responses, a total of 237 questionnaires were eliminated because they were not correctly filled in or belonged to another educational stage. Thus, the final sample consisted of 2316 children. By completing the form, all participants gave their consent to work with the data anonymously. Throughout the investigation, the ethical principles reflected in different documents and official treaties on research ethics were taken into account, thus, guaranteeing the anonymity of the participants, the confidentiality of the data reflected in the questionnaires and other ethical considerations related to the investigation research in education [16,17]. --- Analysis of Data A descriptive analysis is conducted to determine the sociodemographic characteristics and behaviors during the pandemic, applying means , standard deviations and frequencies . Likewise, the Kolmogorov-Smirnov test was performed to determine the normality and homogeneity of the variance in the variables. To establish the differences between the variables, the Student's t-test was used for independent samples and the one-factor ANOVA, using Pearson's Chi-square statistical indicator, to establish the differences. The statistical software SPSS 25.0 was used for data analysis and treatment. --- Results Table 2 establishes the parameters related to the number of technological devices in relation to the area of residence of the participants, for which statistically significant results were obtained . We found that the European participants used more video consoles and tablets , while the Ibero-Americans were the ones who obtained higher values in the use of TVs . For Table 3, the differences were recorded according to the area of residence, taking into account the time spent using technological devices and daily actions conducted during confinement. Statistically significant relationships were also obtained for these results . In European areas, higher values were manifested in the time spent performing PA , use of tablets , school task performance , artistic activities , playing with the family , reading , free play and hours of sleep . While in Ibero-America, there were longer times in the use of video consoles , computers , mobile phone and performing domestic tasks . In addition, the relationship between the state of psychosocial well-being and the area of residence was established , for which significant differences of p ≤ 0.05 were obtained. Ibero-American participants presented higher levels for a negative state in psychosocial well-being and in tiredness/fatigue . While the European subjects showed higher mean values for the creativity dimension . Considering the place of residence, Tables 5 and6 analyze the number of devices according to the level of education of the parents. After establishing statistically significant relationships for European subjects, we found that parents with basic education had a greater number of televisions , while parents with medium education had more video consoles . Finally, those who had postgraduate education reported having more computers and tablets . However, in Ibero-America, parents with postgraduate education presented the highest mean values for all devices: televisions , game consoles , computers and tablets . Tables 7 and8 analyze the relationships between the time spent using technological devices and actions conducted during confinement in relation to the level of education of the parents and the area of residence. Considering the European parents, statistically significant differences were obtained . Those children whose parents had a basic education level spend longer time using the mobile phone, expressed in minutes of use per day . As for those with an average level of education, they obtained higher values in the time spent watching television , development of artistic tasks and domestic tasks . Likewise, the subjects with postgraduate education stated that their children used the computer more and obtained more hours of sleep . In the case of Ibero-America, statistically significant differences were also obtained . Parents with a basic level of education presented the lowest levels in all the study variables, except for the time dedicated to domestic tasks. Although, differences compared to the Europeans were perceived, since the parents with higher education presented the highest mean values in the practice of PA , use of the mobile phone , school task performance , time dedicated to playing musical instruments , reading and free play . In addition, children of parents with postgraduate education spent more time using video consoles , television , computer and tablets , as well as more time spent playing with the family and hours of sleep . All these values refer to average values of time in minutes per day, except for sleeping hours, which are hours per day. Considering the state of psychosocial well-being according to the level of education of the parents and the area of residence , statistically significant results were obtained at the level of p ≤ 0.05. European children of parents with postgraduate education, obtained higher levels in the state of positive psychosocial well-being and the dimensions of happiness , energy and self-esteem . However, the subjects whose parents had a basic educational level, showed higher values for the negative state of psychosocial well-being and in tiredness/fatigue . Considering Ibero-American children, differences were only obtained in the negative state of psychosocial well-being and tiredness/fatigue , with the highest mean values manifesting in parents with basic educational level. Regarding the analysis of sociodemographic and PA aspects, the findings of this study indicate that children residing in Europe showed higher values in the time spent doing PA, free play and hours of sleep. In the same way, the children whose parents had the highest educational level had the highest time for PA. Following these lines, Aguilar-Farias et al. [18] showed that, during the early stages of the pandemic in Chile, time spent in PA and sleep quality decreased, while recreational screen time and sleep duration increased. Children with space to play at home and living in rural areas experienced attenuated impact of the pandemic restrictions on their PA levels, screen time and sleep quality. Older children, those whose parents were 35 to 45 years old and more educated, and those who lived in apartments had greater changes, mainly a decrease in total PA and an increase in screen time. On the other hand, Arufe-Gíraldez et al. [2] detected levels of PA lower than those recommended, with a mean of 31.81 min compared to the 180 min recommended by the WHO regarding the practice of PA. These authors pointed out that the practice of PA was directly associated with time in front of television, computers, degree of tiredness and creativity. In another study [19], PA levels were analyzed and found to be low, as was the time spent on activities such as music or games. Likewise, Zagalaz-Sánchez et al. [1] confirmed a statistically significant influence of the conditions of the house and the place of residence in the daily time dedicated to different educational activities, such as reading, PA, free play or the use of technological devices among children who live in small flats and those who live in large flats or houses with gardens and those who live in urban and rural settings. Gilic et al. [6] highlighted the importance of the parent-child relationship and parent/family support in promoting PA both during everyday life and during crises and challenging health situations such as the COVID-19 pandemic. For their part, Christner et al. [13] found that children aged 7-10 years had more emotional symptoms as well as fewer behavioral problems and hyperactivity than children aged 3-6 years. Children's and their parents' stress level, the extent to which children missed other children, and children's age were negatively related to children's overall life satisfaction. Single parenthood and being an only child were associated with higher levels of childhood problems. Other authors [8] indicated that all the indicators and sociodemographic characteristics were significant, with the dialogical-creative literacy activities and the digital literacy activities performed less frequently by parents. On the other hand, this study analyzed psychosocial well-being, and the results showed that Ibero-American participants had higher levels for a negative state, both in psychosocial well-being and in tiredness/fatigue. Mazza et al. [20] found that lower extraversion and more emotional and hyperactive-inattentive child symptoms were significant predictors of parental distress. In addition, a significant two-way interaction persists between child emotional problems and parental extraversion. In general, parents express high rates of psychological distress, indicating serious concerns during lockdown. Likewise, families with a child who suffers from emotional and behavioral difficulties must be detected immediately by social services in order to activate support interventions in order to prevent chronic and amplified manifestations of these problems. Fasano et al. [21] indicated that the implications of confinement and social isolation measures caused by confinement by COVID-19 in children and their parents are still unknown, according to which, 5% of children showed changes in their emotional state, 55.3% altered their routine and 62.6% showed sleep disorders. Families with lower socioeconomic status were more concerned about health, food shortages and household income. For these authors, the adverse emotional state of the children was associated with the feeling of loneliness of the parents and inversely with the maintenance of a routine. The routine and positive attitude of parents benefits the well-being of children. In other research, Westrupp et al. [22] indicated that subjective well-being levels during the pandemic were considerably lower than pre-lockdown ratings. During the pandemic, a lower subjective well-being was associated with a low educational level of the parents. Such well-being in parents raising children of these ages appears to be disproportionately affected by the COVID-19 pandemic. Specific risk groups for whom government intervention may be warranted include parents in socially disadvantaged backgrounds, parents with pre-existing mental health problems, and parents facing significant pandemic-related job changes [22]. For Bilal et al. [9], there were statistically significant differences in parental stress with respect to parental marital status, age, gender, and employment status. Such differences did not exist in parental stress regarding the number and age of children and parental education [9]. In a later study, Bourion-Bédès et al. [7] noted that difficulties in isolating at home were associated with poor health-related quality of life on the dimensions of psychological wellbeing, relationships with parents, and autonomy. In addition, living in a small apartment, not leaving the house and having indoor noise in the home were associated with poor health-related quality of life. --- Educational Level of the Parents The findings of this study indicate that those who had postgraduate education reported having more computers and tablets. European children of parents with postgraduate education obtained higher levels in the state of positive psycho-social well-being and the dimensions of happiness, energy and self-esteem. Prior to this study, some authors had stated that there are no differences in the volume of PA according to educational level; however, there is a tendency for it to be higher. The different or equal educational level of the parents does not affect the volume of PA practice [23]. Ajejas et al. [24] showed that the prevalence of overweight and obesity in Spain was increasing, and was higher in boys than in girls. According to data from 2011, children who did not engage in any type of PA or whose parents had a low level of education showed the highest prevalence of obesity [24]. The results of Ribeiro et al. [5] revealed that Portuguese parents supported their children during the pandemic mainly through monitoring attention in class and homework completion. However, several variables seemed to significantly determine the time of parental involvement, which was greater when the students attended public schools, when they were less autonomous and younger, when the educational level of the parents was lower, when the child was a male and when online school time was greater. The findings of these authors [5] highlighted the need for a significant investment of time by parents, particularly of children in Primary Education, which makes it difficult to cohere work or teleworking with school activities. Most children spend 2-4 h a day studying, while parents help them at least half the time. Parents mainly explain homework instructions, review their children's work and teach new topics. To a lesser extent, they help their children to solve tasks [25]. Following these contributions, the results of Bokayev et al. [26] showed that the age of the parents and the level of family income were positively correlated with the level of parental satisfaction with distance learning, while the number of children in a family was negatively related to the satisfaction of the parents with the learning process. Olaseni and Olaseni [4] revealed that the parents' socioeconomic status significantly impacted forced learning in students during the pandemic lockdown. Likewise, the personal characteristics and personality of the parents impacted forced learning during confinement in Nigeria. Girls, older youth, youth with a lower socioeconomic status and youth with a migrant background from developing countries seemed to experience the lockdown as more difficult, thus, possibly accentuating the need for services in these groups [27]. Other authors [28] suggested that children with families that established consistent bedtimes and read stories to them more frequently had better scores during the early school years, and this variable was more related than the socioeconomic status of the families and the parents' educational level. According to Kotrla et al. [29] a lower amount of time that children spent using a tablet or smartphone for entertainment purposes and a higher educational level of parents were positively related to more frequent engagement and time spent in interactive reading with children. --- Use of Technological Means We found that the European participants presented more game consoles and tablets, while it was the Ibero-Americans who had a greater number of televisions. Following these lines, Cachón-Zagalaz et al. [19] indicate that the use of digital screens is an important part of the daily routine of children at home. The time children spent sleeping was directly proportional to the time spent in PA and indirectly proportional to the time spent looking at screens. The children who slept the most were those between 0 and 3 years old, especially girls who belonged to large families. PA levels in the sample were low, as were the times spent on activities, such as music or games. Briggs [30] noted that higher-educated, high-income parents who owned a computing device and have internet access at home preferred online classes compared to low-income parents with high school education and less. On the other hand, Nagata et al. [31] indicated that children had a mean of 3.99 h of screen time per day with most of the time watching TV shows or movies , playing video games and watching/streaming videos . On average, black children use 1.58 h more screen time per day and Asian children 0.35 h less screen time per day compared to white children ; these tendencies persisted in most of the modalities. Boys reported more total screen time than girls, which was mainly attributed to video and video games. Girls reported more time texting, social networking, and video chatting than boys. Higher earnings were associated with lower screen time use in all modalities except video chat [31]. According to Bergmann et al. [32] parents reported that young children not required to be in school were exposed to more screen time during lockdown than before. While this was exacerbated in countries with longer lockdowns, there was no evidence that increased screen time during lockdown was associated with sociodemographic variables, such as child age and socioeconomic status. However, screen time during lockdown was negatively associated with socioeconomic status and positively associated with child age, caregiver screen time and children's attitudes toward screen time. Serra et al. [33] indicated a more frequent use of smartphones among Italian children and adolescents during the COVID-19 pandemic, compared to the pre-lockdown period. This may be related to the social distancing measures adopted during the months of the pandemic. Authors [33] observed a significant increase in the excessive use of technological media, which led to many situations of children with sleep disorders. The results of Martínez-Domínguez and Fierros-González [15] showed that the probability of having children with Internet access and use patterns depended on the level of schooling and economic situation of the parents, digital skills and place of residence, as well as the presence of Internet devices. These findings suggest the urgent need to redesign the current policy for the use of technological media with a comprehensive long-term vision that guarantees access to new technologies and their productive use for students immersed in an ecosystem of educational innovation for the next century. --- Conclusions We concluded that, during the period of confinement in European areas, higher values were obtained in the time dedicated to PA, use of tablets, school task performance, artistic activities, family games, reading, playing free and hours of sleep; while in Ibero-America, there were longer times in the use of technological devices and performing domestic tasks. The findings of this research reveal that Ibero-American participants presented higher levels of negative states in psychosocial well-being and in tiredness/fatigue. European parents with basic education had a greater number of TVs, while those with medium education had more video consoles, and those with postgraduate education reported having more computers and tablets. Likewise, European children of parents with postgraduate education, obtained higher levels in the state of positive psychosocial well-being, while Ibero-American parents who had postgraduate education showed a greater number of technological devices. --- Limitations and Future Prospects A limitation of the study is that the data were analyzed through surveys conducted by parents. In future studies, it is suggested that the cases be analyzed more closely at the individual level to determine patterns of behavior of the children depending on the educational level of the parents. A comparison could also be made with other countries to see if the patterns are the same as in this research. For all these reasons, public and educational institutions should establish social and educational policies that guarantee a minimum of information and training for parents so that they can establish strategies at home to promote healthy habits and responsible use of technological media. --- Data Availability Statement: Not applicable. ---
G. On What Tasks Did Children between the Ages of 3 and 12 Years Spend Their Time during the COVID-19 Pandemic? An International Comparative Study between Ibero-America and Europe.
INTRODUCTION Alcohol is the most common psychoactive substance used and abused by adolescents world-wide [1][2][3]. Alcohol use is associated with substantial harms at both the individual and community level [4]. The use of alcohol in childhood and adolescence has been associated with both proximal and distal adverse consequences [5][6][7]. Adolescent problem alcohol use may also cluster with other adolescent health risk behaviours [7,8]. Problem substance use in adolescence and adulthood shows a relatively consistent general association with childhood disadvantage [9]. A previous systematic review found little consistent evidence to support an association between childhood disadvantage and later use or problem use of alcohol [10]. Although some evidence suggested heavier alcohol use among adolescents from more disadvantaged backgrounds [11], other studies found that less disadvantaged childhood circumstances were associated with greater risk of alcohol use in later life [12,13]. Associations between childhood socioeconomic position and alcohol use might differ from those between SEP and more problematic use [10]. Childhood social position may influence adolescent substance use through a number of mechanisms. Children from more disadvantaged backgrounds are more likely to have been exposed to a number of early adversities, including parental substance abuse and psychological problems and family dissolution [14]. These exposures may also associate with later problem substance use [8,15]. In particular, childhood externalizing disorders such as conduct problems have been shown to predict later problem substance use [16][17][18]. Externalizing disorders are also more common among disadvantaged children. However, childhood social advantage may also increase the risk of adolescent substance use, particularly in the case of relatively accessible substances [2,19,20]. Socially advantaged children may be more likely to have the means to purchase alcohol and may be more likely to live in homes where alcohol is available [10]. The particular measure of SEP may also matter regarding the nature of these associations. For example, an inverse relationship between parental education and alcohol use is often assumed, but evidence is weak [10,12,13,21,22]. Evidence on associations between alcohol use and other childhood socio-economic indicators, such as household income or social class, is even more controversial and may suggest a complex picture [10]. Young people tend to consume alcohol for its pleasurable and inebriating effects [2,23,24]. Occurrences of heavy episodic drinking sessions or drinking to intoxication are common among adolescent drinkers world-wide [2,3,25]. In Britain, too, more positive expectations about alcohol use have been linked to more problem use [2]. Hibell et al. [2] reported that boys aged 15-16 in the United Kingdom consumed on average 6.9 cl of pure alcohol on the latest occasion, and girls of the same age consumed 5.7 cl, exceeding the current recommendations for adults [6]. Although some evidence suggests convergence of male and female drinking patterns [2,25,26], other evidence points to important gender differences [1,2,26,27]. For example, boys in the United States have their first drink earlier than girls, drink more frequently and are more likely to binge drink [1]. In mid-adolescence, girls have been reported to mature earlier and to be exposed to higher contextual influences than boys, which may impact upon substancerelated behaviour [15,[28][29][30]. Within and across strata of SEP they may also observe different cultural norms to that of boys [29][30][31]. Therefore, the association between parental SEP and offspring alcohol use could vary by gender. However, evidence is mixed. Most studies reported SEP-adolescent alcohol associations that appeared consistent across genders [10][11][12]22,32]. One study tested explicitly for gender differences in the association of alcohol consumption with indicators of paternal/ maternal education/occupation and found none [32]. Other studies reported a gender-specific effect of dimensions or constructs of SEP on adolescent alcohol use, with contrasting evidence in their reciprocal direction [19,27]. For example, Richter et al. [19] reported that, across a number of countries, with the exception of one, family affluence was related positively to drunkenness in boys, but not in girls. A recent systematic review of evidence on these questions [10] noted contradictory findings and further highlighted a general lack of prospective studies where measurement of SEP clearly preceded measurement of alcohol, where different dimensions of SEP were considered, where the distinction was made between problematic and non-problematic alcohol use and where possible gender differences were examined. This review also noted a general lack of evidence related to alcohol use patterns in contemporary adolescents. We used data from the Avon Longitudinal Study of Parents and Children to address these questions. We investigated associations between different dimensions of early childhood SEP and multiple measures of later alcohol use and problem use and whether these associations differed in boys and girls. --- METHODS The Avon Longitudinal Study of Parents and Children recruited 14 541 pregnant women from the former Avon area in the early 1990s. The mothers and their offspring have been followed-up to date to investigate aspects of their general health and wellbeing, including offspring substance use and detailed sociodemographic data [20,33,34]. Informed written consent and assent were obtained from the adult participants and the young people. The ALSPAC Ethics and Law Committee and the Local Research Ethics Committee approved the study. --- --- SEP All SEP indicators were obtained from self-administered questionnaires to the mother. Based on the Registrar General's classification of occupations [35], parental social class was defined as the highest rank between parents and grouped into four categories: V or IV , III , II and I , and used as an indicator of social capital [14]. The highest maternal educational attainment was categorized as 'less than O-level', 'O-level', ' A-level' and 'university degree' as a measure of human capital. Both social class and education were collected in pregnancy. A measure of household disposable income was averaged over two observations at ages 3 and 4 years of the index child and split into quintiles to denote material capital [14]. The measure had been rescaled preliminarily to account for family size and composition, estimated housing benefits and was expressed in 1995 prices for comparability across families [20]. Father's education and maternal social class, as reported by the mother, were also considered for inclusion. Due to relatively higher proportions of missing data, good correlations with the variables included and either consistent or weaker findings in preliminary investigations, they were excluded from further analyses. All SEP indicators included were correlated moderately, as reported previously [20]. --- Alcohol measures Adolescents reported detailed information on their alcohol consumption via a computer at age 15 years. We first derived a variable for early alcohol onset to measure pre-adolescence alcohol use, as both an intermediate outcome and a marker of later problem use [15,16,36]; the earliest available information from six surveys from age 10 to 16 years was used in hierarchical order to minimize recall bias and maximize the sample for the analyses. For the main outcome variables we focused on data from the clinic at 15 years, as this was after the peak incidence of alcohol initiation; data were adequate to derive multiple phenotypes of alcohol use and response rate was relatively high. The following binary variables for alcohol use were defined: heavy typical drinking , which constitutes sufficient level for intoxication in this age group for both genders [37]; frequent drinking , which is akin to weekly drinking compared to other studies [2,19,25]; and regular binge drinking , which adapts a common definition for binge drinking [15,21]. If participants reported any binge drinking in the past 2 years, but failed to report on the number of times they did so, they would be classified as 'no' . Two additional indicators defined alcohol problem use. Alcohol psychosocial problems experienced in the previous 2 years on more than three occasions included any of the following eight items : 'set a limit, drank more'; 'felt should stop/cut back on drinking'; 'spent a great deal of day drinking'; 'not done things because of drinking'; 'continued to drink despite causing problems'; 'unable to keep up with other activities'; 'parents/friends complained'; and 'had a "blackout" because of drinking'. Alcohol behavioural problems, defined similarly, included any of four dichotomous items: 'used alcohol in dangerous situations'; 'been accidentally physically hurt while drinking'; 'had a problem with the police' and 'got into fights because of drinking'. These latter measures are also comparable with other constructs and with criteria for alcohol dependence or harmful use in adults [2,3,38,39]. --- Additional exposures • Maternal smoking in early childhood: maximum number of cigarettes per day smoked between the child's birth and 4 years , as reported across five surveys. • Maternal drinking in early childhood: at the same surveys above, mothers were classified as 'nondrinking' , 'drinking less than daily' or 'drinking daily' . A total score was derived and categorized subsequently as 0-1, 2-4, 5, 6+ to minimize misclassification for non-response and due to small numbers in extreme cells. • Paternal smoking in pregnancy: father's smoking was based on both maternal and own reports across two surveys in pregnancy. If they reported any form of tobacco use or smoking on more than one occasion per day at either survey they were classified as smokers. • Father's absence: measure derived from multiple selfreports asked of the mother about the biological father's presence/absence in the household between birth and age 10 of the child. The father was classified ultimately as either 'ever absent' or 'present' between birth and 5 years, as a period of particular susceptibility [40]. • Conduct problems: both asked of the mother and the teacher at child's age 11. The highest score reported based on the Strengths and Difficulties Questionnaire [41] was then ordered as 0, 1, 2, 3, 4, 5+ due to small counts in extreme cells. • Alcohol onset: as defined previously; this was included as an exposure of alcohol use at 15. All these childhood exposures were considered as they have been reported previously to predict alcohol use in adolescence and to be associated with SEP. --- Statistical analysis Patterns of drinking are reported by gender. Multivariable logistic regressions were fitted to each alcohol measure at age 15 and included all three indicators of SEP, child's gender and actual age at reporting as explanatory variables. Age was included, as girls were slightly older than boys due to differential response patterns. All SEP indicators entered the analysis as linear terms, as there was no strong evidence of any non-linear relationship. In a second step, interaction terms between each SEP indicator and child's gender were then tested for each outcome. If a likelihood ratio test had a P < 0.05, an interaction term was included and retained in further analyses. Because early SEP may influence early alcohol onset, which can then determine adolescent alcohol use at 15 and possibly conceal other parenting variables associations [16,17,36], each model was adjusted further for all remaining exposures and separately for alcohol onset . Alcohol onset was also analysed as an outcome to aid interpretation of the results. --- Missing data To assess the potential for selection bias we also ran sensitivity analyses after multiple imputations of missing data on the original cohort . Covariates and outcomes were imputed iteratively by chained equations [42][43][44], which assume that data are missing at random, given the observed characteristics of the individuals included in the imputation model. We entered 67 variables overall into the model, which included the measures of interest and auxiliary data to predict both their missingness and the missing values [44]. Conditional imputations were stratified by gender to allow for any interaction with other variables [44]. One hundred imputations of 10 cycles each were run through the command ice in Stata version 11.2 [42]. Parameter estimates were then summarized according to Rubin's rules through the command mim [42]. This method has been described and applied similarly elsewhere [20,44]. We restricted the analysis of the associations of interest only to subjects with one or more measures of alcohol available , including early alcohol onset, as outcome imputations across cycles out with this sample were unstable [44]. --- RESULTS --- Patterns of alcohol use A greater proportion of boys reported early-onset drinking than girls . Boys and girls had similar patterns of alcohol use at age 15 . However, a greater proportion of girls reported heavy typical drinking, whereas boys were more likely to report frequent drinking. Approximately 10% of boys and girls reported binge drinking regularly. A higher proportion of girls reported alcohol-related psychosocial problems. The prevalence of alcohol-related behavioural problems was similar to that of binge drinking and similar in boys and girls. --- Early drinking onset and SEP Higher maternal education was associated negatively with early drinking onset . Risk of early drinking onset did not appear to be related independently to either disposable income or occupational class. --- Alcohol use and SEP Heavy typical drinking and regular binge drinking were both associated negatively with maternal education . However, these associations were attenuated substantially in adjusted models. In contrast, there was evidence for both frequent drinking and regular binge drinking being associated positively with family disposable income, particularly after adjustment for other exposures and after multiple imputation. No interaction of gender with SEP was detected. Associations of gender with measures of alcohol use were generally consistent with those seen in Table 1. --- Alcohol-related problems, SEP and gender There was some evidence of an interaction between gender and dimensions of SEP for measures of alcoholrelated problems in adolescence . Among girls, increasing household income was associated with increasing risk of alcohol-related psychosocial problems, whereas an opposite and weaker association was apparent among boys . For example, when stratifying the marginal effects by levels of income and gender, girls coming from the top quintile of household income had their average odds of alcohol psychosocial problems 1.7 [odds ratio 1.68, 95% confidence interval : 1.33-2.13] times higher than boys with comparable familial income. Conversely, among boys there was an average reduction of 0.029 in the odds of alcohol-related behavioural problems for each additional level of maternal education, with no association apparent in girls . Fully adjusted and sensitivity analyses after multiple imputation showed similar patterns, although a few associations, particularly with social class and maternal education, were attenuated. --- DISCUSSION In a large population-based sample of contemporary adolescents in South West England, both alcohol use and problem use were relatively common. There was also evidence that multiple dimensions of childhood SEP had different associations with alcohol use and problem use in adolescence. These associations also differed by gender. Particularly among boys, higher maternal education was associated with lower risk of alcohol-related behavioural problems, whereas among girls higher household income was associated with greater risk of alcoholrelated psychosocial problems. Attenuation of some effects after adjustment for established childhood risk factors for problem alcohol use suggested possible mediation through these factors which would need further investigation. Alternative mechanisms are discussed below. --- Findings in the context of previous evidence Our findings challenge the view that childhood social advantage is associated generally with healthier behaviour in adolescence. This adds to evidence both from ALSPAC [20] and elsewhere that aspects of childhood SEP, particularly higher household income, may be associated positively with certain types of unhealthy behaviour [2,12,19,22]. An association between higher parental education and healthier behaviour in adolescent offspring has been reported previously, although in relation to alcohol use this evidence is mixed [10,12,13,[20][21][22]. Moreover, most previous studies investigated limited domains of both SEP and alcohol use. There has been little prior investigation of differential SEP effects on alcohol use by gender. Some studies have suggested a greater vulnerability to alcohol-related problems among adolescent girls due to earlier maturation and the greater influence of contexts and peers [15,[27][28][29][30]. We are not aware of previous evidence that this phenomenon may differ by SEP. However, there is some evidence that higher social strata may have a more liberal attitude towards drinking, particularly in girls [17,29,30]. --- Possible mechanisms Our study was not intended to investigate mechanisms, and any discussion of this based on our findings is necessarily speculative. Increased risk of alcohol use and related psychosocial problems with greater household income may reflect greater availability in such households or greater 'purchasing power' among children from such households. There may also be cultural norms to explain different alcohol behaviours across the socioeconomic spectrum. The positive association of alcohol problem use with income in girls could be explained partly by their susceptibility to ethanol [37] and heavier drinkers coming from more affluent families. The current findings might also be a reflection of the 'emotional climate' that may operate within families in different social strata. For example, one longitudinal study reported that parental disapproval of alcohol use was particularly protective in boys and also, to a lesser extent, in girls [27]. It is also possible that parental disapproval of alcohol misuse is associated with higher parental education or higher social classes. Weaker inverse relationships between a higher maternal education and alcohol problem use in girls compared to boys could also reflect a reduction in maternal closeness at this time [27]. --- Strengths and limitations This study has several strengths. Our general populationbased sample of contemporary adolescents was large enough for us to examine effects by gender. Our prospective design minimized the risk of recall bias. We had information on different dimensions of social position and were able to derive multiple measures of alcohol use and problem use. We also had information on key childhood exposures likely to confound or mediate an association between SEP and problem alcohol use. The measurement of our main exposures and covariates clearly preceded that of our alcohol use outcomes, thus minimizing the possibility of reverse causation or recall bias. Our study also had limitations. Alcohol problems were self-reported, thus may have been subject to reporting bias. Despite inclusion of the main socially patterned exposures influencing adolescent alcohol problem use, it is still possible that our associations reflect mechanisms we were not able to consider, such as peer-related factors and parenting practices. Like most prospective studies, ALSPAC experienced attrition which was higher among disadvantaged children. We addressed this issue through sensitivity analyses after multiple imputation of missing data which suggested that attrition had not introduced any substantial bias; nevertheless, we cannot exclude the possibility of such bias. Our main alcohol-related outcome measures were collected at age 15 and based where possible on standard criteria. While this is appropriate in the context of the particular issue of adolescent drinking, it is possible that problem alcohol use phenotypes are still emerging at this age, and that at later ages different patterns of association may be observed. Our findings derive --- Policy implications Despite sparse evidence of effective strategies to curb adolescent drinking [30,45,46], interventions towards targeted groups or individuals have yielded more promising findings [45][46][47][48]. Our results may have some implications, particularly for parent-orientated and gender-specific prevention strategies. The increased affordability of alcohol among wealthier families and its availability may enhance opportunities for unhealthy drinking among their offspring . Improving communication with the family and favouring ties, particularly mother-daughter bonds, may help to prevent health-damaging behaviours among adolescents [27,49]. Policies to tackle irresponsible drinking among adolescents should focus not only on those from more deprived backgrounds, but include interventions for the more affluent. --- CONCLUSION Children from higher-income households were at greater risk of some types of adolescent alcohol problems, and these risks appeared different in girls compared to boys. Policy around reducing problematic alcohol use among adolescents should reflect awareness of these issues, and not be predicated on the notion that alcohol problems are predominantly a feature of social disadvantage. --- Declarations of interest None.
To investigate associations between socio-economic position in early life and later alcohol use and problem use among male and female adolescents. Design Birth cohort study. Setting South West England. Participants A total of 2711 girls and 2379 boys with one or more measures of alcohol use or problem use at age 15 years. Measurements Exposure measures were highest parental social class, maternal education and household disposable income (all maternal self-report before school-age); outcome measures were heavy typical drinking, frequent drinking, regular binge drinking, alcohol-related psychosocial problems and alcohol-related behavioural problems. Findings Alcohol use and related problems were relatively common amongst adolescent girls and boys. Boys were slightly more likely to report frequent drinking and girls were slightly more likely to drink heavily and to experience alcohol-related psychosocial problems. Higher maternal education appeared protective in relation to alcohol-related problems, particularly among boys. Higher household income was associated with greater risk of alcohol use and problem use, most apparently among girls. Conclusions Children from higher-income households in England appear to be at greater risk of some types of adolescent alcohol problems, and these risks appear different in girls compared to boys. Childhood social advantage may not generally be associated with healthier behaviour in adolescence.
Obesity is a risk factor for a variety of chronic illnesses, including hypertension, dyslipidemia, type 2 diabetes, heart disease, stroke, gallbladder disease, osteoarthritis, sleep apnea, asthma, respiratory problems, and some cancers . 3 Poor nutrition and insufficient physical activity are major risk factors for chronic diseases and are major contributors to obesity. Researchers and community members in Hawai'i have worked together to promote obesity reduction and chronic disease control. Best known are interventions to test the effects of the traditional Hawaiian diet -a high complex carbohydrate, moderate protein, and lowfat diet that Native Hawaiians consumed before their contact with the West. [4][5][6] Results from THD studies demonstrated immediate improvements to serum lipid and glucose profiles, in addition to weight loss. [4][5][6][7] Unfortunately, improvements are difficult to sustain once the program ends. A follow-up study of diet study participants found that lack of support for healthy eating and exercise at home and work to be a barrier. 8 Worksites are ideal settings for health promotion programs, because working adults spend a majority of their waking hours at work, and worksites are characterized by social networks, which can provide significant support for positive behaviors. 9 As Native Hawaiian researchers and activists who have implemented and studied THD programs, the first two authors talked to their colleagues in worksites that employed large proportions of Native Hawaiians about designing work-based weight loss programs. This collaboration, the DHW project, explored administrative policies and supports for healthy eating and physical activity, along with employee preferences for worksite wellness programming. This study was conducted under the auspices of 'Imi Hale Native Hawaiian Cancer Network , one of 25 Community Network Programs funded by the National Cancer Institute's Center to Reduce Cancer Health Disparities. 10 'Imi Hale is initiated and led by Native Hawaiians. It is dedicated to mentoring Native Hawaiian researchers, supporting them to design and test interventions in cancer prevention and control, such as the DHW project. Several of the worksite leaders in the DHW collaborative are advisors to or partners with 'Imi Hale in its mission to reduce cancer disparities and develop a cadre of indigenous researchers. In this paper, we describe the community-based research processes used by the DHW collaborative, along with the findings from the worksite assessment and interactive interpretation sessions. --- METHODS As all projects sponsored by 'Imi Hale, the DHW project was guided by principles of community-based participatory research . 11,12 This project incorporated indigenous community leadership, respect for Native Hawaiian culture and values, and co-learning and co-ownership of the project. 10,13 These principles were honored as the DHW collaborative developed the research, collected data, and interpreted findings. --- Engaging Indigenous Leaders Involving indigenous community leaders is a crucial first step in designing and building awareness and support for community-based programs in Native Hawaiian communities. A year before project funding, a DHW project leader , a young Native Hawaiian nutritionist, asked Hawai'i's first Native Hawaiian nutritionist to co-lead the project. CKH is well known for a lifetime of activism around Hawaiian health. She served as a community mentor to JHL and her involvement increased the project's credibility and reach. The third author mentored the team throughout the design, grant writing, data analysis, and reporting phases. Early in the conceptualization stage, 10 Native Hawaiian-serving organizations already partnering with 'Imi Hale were invited to participate. Meetings were held to discuss the organizations' participation, with the approach differing based on the researchers' relationships with the organization's leadership. Traditionally, Native Hawaiian communities were composed of groups of close-knit families that would recite genealogical relationships between individuals, families, and communities to gain acceptance as they ventured into outside communities. This reliance on relationships and reputations continues to a great degree in Hawaiian communities today. 14 Thus, determining the nature of relationships between the researchers and the organizational leaderships was an important first step, and guided how the native researchers approached each organization. Five of the eight organizations had worked with 'Imi Hale since 2000 and the native researchers had positive past experiences working with the leadership of these organizations. Soliciting participation of "known" leaders involved spending time catching up on past projects, mutual friends, and personal wellness. Discussion of the DHW project was initiated after this catching-up phase. The other three organizations also had partnered with 'Imi Hale, but leaders had not worked specifically with the native researchers spearheading DHW. In these cases, a face-to-face meeting was scheduled with the agencies' executive directors. Initial meetings involved building rapport between the executives and native researchers by providing personal background information , island of origin for self and ancestors, high school attended, marital status, and family size. Native Hawaiians traditionally generate knowledge of place and family before a relationship can begin and mutual trust is developed. Impressions generated by the end of these initial meetings would be weighed carefully as agencies decided whether or not to participate in the project. Agreement to participate in the project, after an invitation to do so, is a public statement of mutual trust between researchers and participating agencies and a commitment to the project. By showing affiliation with each other, both the researchers and agency representatives trust that care will be taken to not exploit or take advantage of the health and welfare of all involved and that the goals of the project are of mutual benefit. Following these procedures, 8 of the 10 agencies agreed to participate-4 health agencies, 3 social service agencies, and one faith-based organization. The other 2 agencies decided not to participate, citing time constraints. The research team agreed to include all sub-sites of each organization in data collection. This commitment demonstrated that no one would be left out, and that ideas, needs, challenges, opinions, and preferences of all employees were valued. All but one agency had multiple offices, and 3 agencies had offices on five or more of Hawai'i's seven inhabited islands, for a total of 36 sites . Some the sites were very rural, requiring the researcher team to travel by commuter plane and rental car to collect data and share findings. --- Collecting the Data Data collection was informed by a previous study by Sallis et al. 15 on policy development and environmental changes to promote physical activity. The study framework use by Sallis et al. was expanded to include healthy eating, as both physical activity and healthy eating are needed for the prevention and reduction of obesity . The DHW team agreed to employ different methods to capture data on administrative policy, administrator preferences, and employee preferences. Researchers aimed to ensure broad participation, in each of the four assessment methods utilized . As part of the research team, administrators reviewed and approved all tools and consent forms. Decision making was equitable-researchers provided the tools and guidance to help collect information and agencies provided access and insights to the information being identified. The entire project and all tools and consent forms were approved by the Institutional Review Board of the Native Hawaiian Health Care System. This community-based IRB was formed by Native Hawaiians health agencies to ensure that research is respectful of native concerns and builds research capacity in native community, paying added attention to group harm and data ownership and dissemination. About two thirds of the membership are Native Hawaiian. 16 Environmental Assessment-To assess the worksite environment, researchers and site supervisors of the 8 main offices and 28 satellite offices worked together to complete a standardized tool called the Checklist of Health Promotion Environments at Worksites . The CHEW is a direct observation instrument designed to assess environmental characteristics known to influence health-related behaviors. 17 The checklist includes 112 items in three domains: Physical environment ; information environment ; and surrounding neighborhood . At each site, the organizational representative and researchers together inspected the buildings, walking every corridor, around the grounds outside, and through the neighborhood just beyond the grounds. Instructions for scoring the CHEW, detailed in Oldenburg's research 17 were followed. For this analysis, scales were developed for physical activity and nutrition-related supports. Some items were omitted from the CHEW, for example, elevator and stair facilitation scales were omitted because there were only three sites with elevators. Administrative and Managerial Supports-Managers and/or site supervisors associated with the eight worksites were interviewed to assess current resources, worksite policies, and level of management support for establishing and maintaining healthy worksite environments. The Management and Policies Support tool, which was developed for the 3W Study by the Kaiser-On-The-Job Program 18 was used. This tool has a series of questions in 11 domains, each domain pertaining to a different aspect of worksite health policies. For this study, only 10 areas were measured; the item on stairwell access was eliminated because most worksites were single-story buildings. Scores were calculated for 10 MPS domains: Wellness committee; physical activity plan; encouragement of active breaks; physical activity facilities; after-hours access to physical activity facilities; nutrition plan; health fair; health education classes; promotion of health programs; and health promotion budget. Each domain was scored as a percentage . For domains with multiple items, the domain score is derived by dividing the number of items to ensure equal weighting of the categories. A composite score is created by summing domain scores. In line with CBPR, data were collected in partnership with the site supervisor using an educational, rather than matter-of-fact, approach. The interaction served to raise awareness about employee wellness and the different areas where wellness could be addressed. Focus Groups-Researchers conducted focus groups with employers and employees to elicit their opinions and suggestions about desirable components for worksite-sponsored health promotion activities and acceptable ways to measure changes resulting from health programs. Focus group questions were guided by the Sallis framework and touched on three areas: Availability and access; desired education, programs, and incentives; and acceptable measures of determining positive health change. A total of 56 individuals participated in 9 focus groups conducted on five islands, including O'ahu, Moloka'i, Kaua'i, Maui and Hawai'i. Each focus group lasted about 90 minutes. The focus group team consisted of the authors and two Native Hawaiian research interns. All participated in a 4-hour training in focus groups designed to build indigenous research capacity. The first two authors took turns facilitating focus groups on different islands. As with most Native Hawaiian gatherings, focus group sessions started with a pule to bless the food and solicit spiritual guidance for a productive and positive discussion. A nutritious lunch was provided for participants as a demonstration of gratitude for their participation and attentiveness to their physical well-being. Separate focus groups for administrators and staff were held to encourage open discussion. As a result, line staff readily voiced opinions and many ideas. Allowing line staff to share among their peers, without fear of possible reprisals, helped to build support and enthusiasm for the project. The exception was on Kaua'i, where staff sizes were small and administrators and line staff agreed to participate in a single focus group. Recorded focus group discussions were transcribed, and each verbatim transcript was read by at least three members of the research team. Readers extracted themes independently, then met with team members to reach consensus on themes and which participants spoke to each theme. Together, team members created a code book, grouping themes into four categories: Supports; barriers; ideas for programs and policies; and acceptable evaluation methods. Employee Survey-Based on focus group findings, a questionnaire was developed that included 35 multiple choice items and took approximately 10 minutes to complete. Items queried preferences for specific program, policy, and evaluation ideas that had surfaced in the focus groups. Returned surveys were not linked to employee names, and data were analyzed in aggregate. The survey was sent via the Internet to the directors of the participating agencies, who were partners in the research, and they forwarded it to their employees. This distribution method demonstrated the executive directors' support of the study and emphasized the importance of participating in the survey. About 437 out of an estimated 608 individuals total from all eight organizations , completed the survey. Response rates by agency ranged from 66% to 79%. The literature suggests an average response rate of 30% for an on-line survey and 40% for an e-mail survey. Thus, the response rate of 72% demonstrates broad buy-in for the research, and findings represent the views of the majority of employees. Data were analyzed in aggregate to preserve the confidentiality of the respondents and agencies. Not every respondent answered every question, resulting in slight differences in total responses by question. --- Data Analysis and Interpretation After completing the analyses of the four different assessments, findings were shared and interpreted first at a meeting with the executive directors as research partners. It was made clear that no findings would be shared beyond this group without their express permission. Ultimate approval to share the data and guidance on planning the staff presentations also resulted from this meeting. The participatory approach in data sharing and interpretation enhanced the respect that administrators had for the Native Hawaiian researchers, as it was a demonstration of the co-learning and power-sharing principles of CBPR. After this initial meeting, lunchtime presentations were conducted on each of the major islands, to which administrative and line staff from participating organizations were invited. At each presentation, researchers solicited feedback on the findings and thoughts on the components of an appropriate worksite wellness program . These meetings provided excellent opportunities for information and idea sharing between all agencies and partners and helped shape the subsequent community presentations as well as the development of the next phase of the project. Next, findings were presented at 'Imi Hale's annual Report to the Community, where Native Hawaiian researchers with ongoing or recently completed projects share project results to more than 80 indigenous outreach workers, community partners, and health professionals. Participating agencies were represented at this community presentation and publicly praised the project's success. The presentation garnered communities' praise for the accomplishments of the researchers, the involvement of the participating agencies and encouragement for future work. --- RESULTS --- Data Findings Several key findings resulted from the onsite inspections using the CHEW to assess healthenhancing aspects of worksite environments. Higher physical activity environmental supports were seen in rural versus an urban locations, because they generally provide more outdoor opportunities for physical exercise. Having lunchroom appliances, for example, a refrigerator and microwave, was the greatest support for healthy eating behaviors because it allowed employees to store and heat a healthy lunch brought from home. From the interviews with managers and supervisors using the MPS, it was learned that the number and type of healthy worksite policies and opportunities varied across and within organizations, and no pattern was observed among islands or between rural and urban sites. As expected, the four participating health agencies, because of their mission and services, had more health activities available to their staff than the other agencies. The focus groups conducted on each island provided information about the availability of healthy food choices, motivators for engaging in regular exercise, ideas for education programs, incentives for participants, and "acceptable" measures of change. Regarding physical exercise, participants were very supportive of worksite policies that allowed workers time during the work day for exercise. Regarding healthy eating, participants noted that eating behaviors were affected by access to healthy foods, manageable work load, and group support. For those with heavy workloads, eating fast foods or "whatever is around the office" had become habit. The availability of lunchroom appliances, food co-ops, and group support improved access and increased motivation to make healthier choices. Regarding preferred, hence, acceptable methods of evaluation, focus group participants suggested measuring changes in weight, body fat, and other vital measures. This was also confirmed by the majority of survey respondents. Allowing employees to provide input on evaluation measures will help to ensure that acceptable evaluation methods are used in future worksite wellness programming and research. Survey results are shown in Table 3. Support groups, group activities, worksite policies, and accessibility to healthy food choices were selected as the most preferred strategies to help employees improve healthy eating and exercise patterns. Observing healthy behaviors practiced by the administrator and other co-workers was also perceived as very motivating, confirming the influence of role models at the worksite. --- DISCUSSION In line with the dual purpose of the paper, to share both our CBPR process and the worksite assessment results, the discussion provides reflections on both the process and the findings. --- Reflections on the Process In CBPR, researchers must learn about the culture of the community and establish trust before the actual research can move forward. [19][20][21] This process requires time, because relationships are built in both a historical and institutional context, while concurrently developing personal trust between the researchers and the community at large. 22 Nonminority researchers may have to work harder and longer to establish this trust because, by default, they are "outsiders" in the community. In most cases, non-minority researchers come from privilege, and have had opportunities and advantages not readily accessible to minority Americans. 22,23 Our project, however, was led by indigenous researchers and interns, who are from the Native Hawaiian community and are considered "outsider-insiders." Although they are researchers, they can personally relate to participating community members because they share cultural, historical, and sometimes personal experiences, including historical trauma, racism, and oppression with the Hawaiian community. 12,24 Because indigenous researchers led this study, the process of establishing trust was not as time intensive as a first-time partnership might be. Still, protocol was followed in approaching administrators, and protocol differed depending on prior relationships with the agency and administrator partners. Native Hawaiian researchers were more formal in their approach to Native Hawaiian administrators they did not know, meeting face-to-face, sharing ancestry, and so forth. Because researchers were native, common connections were easily identified and new friendships were formed relatively quickly. This gave the researchers more rapid access to "insider" information not typically shared with "outsiders." It also allowed agency members to be candid and comfortable when sharing personal ideas, goals, and struggles without fear or shame of being misunderstood. The community gained a sense of empowerment by receiving validation of their beliefs and ideas, and through the realization that the information they provided shaped future project design. Along with the feeling of empowerment resulting from this project, the community participants were co-owners of the project. The high level of trust and accountability of the researchers, the interactive process used in the design and approval of the project, and the interactive nature of data collection and interpretation helped encourage agency espousal of this project. These actions demonstrated commitment to and genuine caring for the community members as part of the research team. Relationships and trust were strengthened by the shared cultural ties and the positive feelings associated with this project. The willingness of the community and researchers to be co-learners was another strength. This education was largely gained through a "listening-dialogue-action approach" between the researchers and community participants. 25 The co-learners willingly identified and reflected on pertinent issues involved, increasing their cognitive understanding and knowledge of real issues and making joint decisions on how to enact positive change. This on-going process will help the community to build capacity and gain independence in developing and maintaining worksite programs. It will also help the researchers to gain knowledge and insights necessary to provide continuing support to the worksites, and to assist in similar initiatives at other worksites. --- Reflection on the Findings All eight agencies guided the development to the DHW project and participated in the assessment even though agencies and subsites were at different stages of readiness to plan and implement formal wellness programs in their worksites. Six of the worksites already had some worksite wellness policies and/or programs in place, and both their administrators and staff were enthusiastic about the DHW project. They expressed willingness to allocate staffing, resources, and time to formalize and expand worksite wellness programs. Two agencies had no wellness policies or few activities in place. Their administrators seemed to be willing to develop programs, but were less enthusiastic about committing staff or other resources. Although all agencies participated in focus groups and the survey, participation rates were lower in these two agencies. Line staff were found to be more focused on work, rather than worksite health promotion, owing to a combination of being more removed from the decision-making processes by the administrators and less informed about its benefits. 26 Thus, these agencies could benefit from information on potential benefits of worksite wellness program, namely, healthier employees, to help encourage enthusiasm for a WWP. Toolkits were identified by participants as an appropriate tool for their worksites. Generally, toolkits are developed to meet the needs of agencies in various stages of readiness. According to the Centers for Disease Control and Prevention Healthier Worksite Initiative, toolkits are "time saving aids that provide customizable turn-key solutions" and can be selected to meet identified needs and resources of the worksite and its employees. 27 They are a compendium of resources and tools that often include step-by-step instructions for getting started, menus of possible activities, and details on how to implement specific activities within a specific subject of interest. Toolkits would provide each worksite the guidance, resources, and flexibility needed to independently plan and tailor their WWP, based on interests, limitations, and parameters. The concept of using toolkits in worksites and for other community programming fits with another CBPR principle-selfdetermination-because they allow worksites to design and customize their individual WWP and prioritize their activities. 28 The Internet contains a plethora of worksite wellness toolkits developed by different states and organizations within the United States. Following this study's thorough baseline assessment of employee interests and worksite supports, the next step will be to select a toolkit already developed and tested that most closely fits the identified needs and preferences of the participating agencies and tailor it for cultural appropriateness and local usefulness. Different sites and subsites within each organization will be consulted frequently throughout the toolkit adaptation process to ensure appropriateness and acceptability, continuing to build the sense of empowerment and ownership of the project and its chances of success. --- CONCLUSION This project is the first worksite wellness project conducted by Native Hawaiians researchers in collaboration with Native Hawaiian worksites. Although all researchers may be considered as "outsiders" by the community, our Native Hawaiian research team was recognized as belonging to the community, thus helping us to establish trust and acceptance. Findings demonstrated that Native Hawaiians are open to WWP that focus on weight loss, healthy eating, and physical activity. Data collection efforts utilized within a CBPR construct provided opportunities for community engagement at both the administrative and worker levels. This resulted in comprehensive and detailed information on Native Hawaiian employee preferences and employer supports for WWP. Although findings may not be applicable to non-Native Hawaiian serving worksites, our process of engaging indigenous researchers and community members together in research around worksite wellness may have value in other minority communities.
Background-Native Hawaiians today face a disproportionately high rate of obesity. The Designing Healthy Worksites (DHW) project investigated existing administrative policies and supports for healthy eating and physical activity at eight Native Hawaiian-serving organizations in Hawai'i, along with employee preferences for worksite wellness programming. Objectives-We describe the process by which Native Hawaiian researchers and community members worked together to gather formative data to design future worksite wellness programs. Methods-A Native Hawaiian doctoral student (JHL) and a Native Hawaiian activist (CKH) spearheaded the project, mentored by a Caucasian professor (KLB) who has worked in Hawaii communities for 30 years. Advisors from the worksites supported the use of environmental assessments (n = 36), administrative interviews (n = 33), focus groups (n = 9), and an employee survey (n = 437) to collect data. We used an interactive process of data collection, sharing, and interpretation to assure mutual agreement on conclusions and future directions. Results-Worksites were at different stages of readiness for worksite wellness programming, suggesting that a toolkit be developed from which agencies could create a program that fit. Activities preferred by large proportions of employees included support groups, experiential nutrition education (e.g., cooking demonstrations and field trips for smart food shopping), food buying clubs, and administrative policies supporting healthy lifestyles. High participation in data collection and interpretation suggest that our methods fostered enthusiasm for worksite wellness programming and for Native Hawaiians as researchers. The team continues to work together to develop and test interventions to promote worksite wellness.Native-directed research that engages administrators and employees in designing programs heightens program acceptability and applicability.
mechanisms leading to academic outcomes for diverse groups, especially for those groups who are economically disadvantaged and at risk for low academic attainment. In attempts to understand the influence of economic disadvantage and child developmental outcomes , researchers have focused on two broad models termed the Family Investment Model and the Family Stress Model . Both the Family Stress Model and the Family Investment Model seek to explain how socioeconomic disadvantage negatively influences parenting that then decreases positive child outcomes, such as academic achievement. Briefly stated, the Family Investment Model is based on the principle that financial strain reduces parental capacity for investment in child developmental outcomes. That is, lower-income parents are less able to provide for cognitively stimulating activities and opportunities. Challenges in parenting and provision of resources in turn reduce child academic achievement and accounts for the influence of income on child outcomes. The Family Stress Model is based on the perspective that families who experience financial strain have increased forms of stress and that these forms of stress reduce parents' capacity to respond to their child sensitively, which then has an inverse association with positive child outcomes. What is clear from empirical tests of both the Family Stress Model and the Family Investment Model is that early parenting plays a crucial role in enhancing children's developmental outcomes generally, and academic achievement specifically . Moreover, research on parenting practices stemming from Family Stress Model and Family Investment Model has demonstrated that these practices mediate the influence of socioeconomic disadvantage on academic achievement . Typically, researchers have focused on models of mediation because their aim has been to account for the relation between socioeconomic disadvantage and child outcomes . The current study, however, takes a unique perspective with regard to family stressors and parenting practices and focuses on the moderating effect of socioeconomic disadvantage on family stressors and parenting practices, which we will refer to as family processes. As explained by Bradley and Corwyn "moderator models are concerned with the conditions in which the process operates" . Thus, the aims of this study were not to account for the relationship between early disadvantage and distal child outcomes but rather to examine how family processes vary by socioeconomic context. That is, to illuminate the important potential interactions between socioeconomic context and family processes . Few other studies have addressed the moderating influence of socioeconomic disadvantage on the relationship between family processes and child outcomes . This gap in the literature represents not only a limitation in our current knowledge, but it also highlights a potential limitation in intervention service aimed at preparing children for school success. If family processes themselves vary as a function of socioeconomic context, we should extend our understanding of how such family processes operate within different socioeconomic contexts . Accordingly, intervention practice should be designed to address factors relevant to family processes among children at-risk for school problems. In other words, universal intervention services, based on the results of general population studies, might not be as efficient as intervention services designed to meet the specific needs of economically disadvantaged children. The current study aimed to address this gap by examining socioeconomic context as a moderator of family processes. --- Family Processes: Stress Related Antecedents and Parenting Practices Quality of cognitive stimulation and support in the home environment and parental sensitivity represent two domains of parenting that have been studied extensively with respect to child developmental outcomes. Both have been shown to be important predictors of cognitive performance and academic achievement . There is evidence that parenting, in the form of a stimulating home environment and sensitive parenting, is negatively influenced by family risk factors that include stressful life events, parenting stress, and maternal depression. These factors operate by depleting parental capacity to provide cognitive stimulation and to respond sensitively . Importantly, there is some evidence in the literature that at least two of these factors, stressful life events and parenting stress, are moderated by socioeconomic disadvantage. Bradley and Corwyn , in comparing models of moderation and mediation argued that if "researchers obtain weak or inconsistent results when investigating a particular association, it often implicates a moderator effect" . Stressful life events are not only a correlate of poverty but also a predictor of parenting practices . However, inconsistencies are noted in the literature. Burchinal et al. found life events were negatively correlated with quality of stimulation in the home environment as measured by the Home Observation for Measurement of the Environment total score, a measure of quality parenting practices . Conversely, Brooks-Gunn et al. found that stressful life events did not predict parenting behavior in particular, while Gershoff, Aber, Raver, and Lennon showed that material hardship, defined as a stressful life event, was positively correlated with positive parenting--an unexpected finding. These inconsistent findings, based on different samples, may actually be an indication that the effect of stressful life events is moderated by some other factor. Parenting stress is also an important antecedent to parenting practices . Feldman et al. reported significant associations between parenting stress and later parenting sensitivity and infant cognitive development. In a sample of low-income young children, Ritchie and Holden found that parenting stress predicted maternal affection and punitive parenting practices. However, Dilworth- Bart, Khurshid, and Vandell noted that the relation between parenting stress and income is not necessarily strong and may require a sample with a significant proportion of lowerincome families to detect , which again implicates a potential moderator effect. Depression is another important form of stress that is related to decreasing parents' capacity to respond sensitively . Depression is related to more negative and intrusive parenting or withdrawn and passive parenting . These findings in the literature are consistent and indicate that depression is a risk factor that decreases sensitive parenting. However, we were not able to identify studies that have tested whether or not depression is related to the quality of the home environment as measured by the HOME scale. It is reasonable to expect depression to be negatively associated with the ability of parents to provide a cognitively stimulating home environment . Very little is known about this potential pathway of risk. --- School Readiness: Child Level Contributions to Academic Achievement Several studies have suggested that a child's own school readiness, broadly termed as a child's readiness to learn , is an important contributor to academic achievement . A child's school entry cognitive capacity has been positively associated with their later academic achievement. For example, La Paro and Pianta documented that early language abilities have a positive association with academic attainment. In prior studies, parenting practice including parental sensitivity and parental provision of a stimulating home environment have been linked to early language abilities. Early language skills are also negatively associated with parental lower socioeconomic status and its correlates, such as low maternal education and young maternal age at birth of first child . Several studies have documented that a child's personal competencies are important predictors of academic achievement. For example, the ability to pay attention to school related tasks and manage attention is a skill that enhances the capacity of children to function within the classroom . Alexander, Entwisle, and Dauber found that the ability to sustain attention predicts academic achievement. Attention has also been shown to mediate the relation between early parenting and academic achievement . Duncan et al. found that school entry attention skills were related to achievement in math, reading, and verbal scores during middle childhood across five data sets that measured school entry skills, even after controlling for prior cognitive achievement, prior attention skills, and other background measures. Moreover, lower attention scores are more likely to occur in lower socioeconomic status children and may be an especially important indicator of risk for disadvantaged kindergartners . Finally, high social competence and its related characteristics have been linked to school success and a positive transition into the school environment , although findings are somewhat mixed. Classroom compliance and cooperation are associated with higher achievement. It may be that cooperative, prosocial, and compliant children are able to get along better with peers and teachers as well as take greater advantage of the learning environment. However, in more comprehensive models with extensive lists of control variables, such as the work by Duncan et al. , prosocial orientation or positive social skill ratings were not predictive of academic outcomes. In sum, children contribute to their own achievement through the assets that they bring to the school setting . --- The Current Study The studies reviewed here illustrate the importance of family processes and school readiness for academic attainment. Moreover, to better understand and therefore effectively intervene in early family processes that support academic achievement, we must consider whether these family processes vary or interact with socioeconomic context. Relevant to the context of disadvantage, we therefore suggest specific interactions as they relate to family processes. First, we hypothesized that both stressful life events and parenting stress will have a stronger negative effect for those within a context of socioeconomic disadvantage. The rationale is that those in disadvantaged contexts have fewer resources by which to ameliorate stress; under conditions of socioeconomic disadvantage, then, these risk factors become more potent because the environmental context offers fewer buffers. We hypothesized that those in a more advantaged context will be buffered, to a degree, from the impact of both stressful life events and parenting stress, in part because those in advantaged contexts would have fewer types of stress overall and would have better access to resources within which to manage stress relative to those in a disadvantaged context. As Cowan, Cowan, Ablow, Johnson, and Measelle have argued, life stressors challenge families' coping capacities. In contrast to our hypotheses regarding stressful life events and parenting stress, we hypothesized that socioeconomic context would not moderate the impact of depression on parenting. In part, this is because maternal depression decreases a parent's emotional availability to the child, and the effect of low emotional availability is not necessarily buffered by other supports or material resources because it occurs in the context of a relationship. Depression in this study was measured as actively experiencing depressive symptoms. It may be that those in an advantaged context have a higher probability of receiving medical treatment for their depression, relative to those in a disadvantaged context; however, those who are experiencing symptoms, regardless of context, will be less emotionally available to their child and less sensitive to their child's needs. We also hypothesized that early parenting practices would be more important for those in a disadvantaged context and that these factors would directly enhance academic competence in first grade for disadvantaged children, as these are important precursors to school achievement. This rationale stems from the literature on resiliency, such that those children who are exposed to significant adversity in their life are more resilient when they have strong supportive family relationships and processes . We also argued, for both groups, that parenting would affect school achievement as mediated by school readiness. In other words, we did not hypothesize an interaction for the mediated pathway from early parenting to early achievement via school readiness. In both advantaged contexts and disadvantaged contexts, stimulating home environment and parenting sensitivity would support the development of preschool language and prosocial orientation while decreasing problems with attention. Finally, we expected school readiness to operate similarly for children regardless of context. Difficulties with attention, for example, would negatively affect all children, even though disadvantaged children might have a higher probability of inattention. In the same way, we expected both preschool language and prosocial orientation to enhance academic achievement, regardless of context. Figure 1 presents these expectations. Dashed lines represent hypothesized interactions between socioeconomic context and family stressors and parenting practices; all dashed lines represent stronger positive or stronger negative effects for those families in a disadvantaged context. Solid lines represent processes that we hypothesize do not interact with socioeconomic context. Another important consideration is that socioeconomic disadvantage is multifaceted. Indicators widely used to represent socioeconomic status are highly correlated and difficult to disentangle . Therefore, using latent profile analysis, we empirically incorporated such interwoven associations among different socioeconomic status indicators in the current study rather than choosing one individual indicator over the others. --- Method Participants This study was based on secondary analysis of data from the NICHD Study of Early Child Care and Youth Development , a comprehensive longitudinal study examining early childcare experiences and a broad range of child developmental outcomes . Participants in the NICHD SECCYD were recruited from January to November of 1991 from hospitals located in the 10 locations across the United States. A conditionally random sampling plan was used to ensure that the recruited families included mothers who planned to work or to go to school full time or part time in the child's first year, as well as some who planned to say at home with the child and reflected the economic, educational, and racial/ethnic diversity of the data collection sites. Exclusionary criteria used were mothers 18 years or younger at the time of the child's birth, families planning to move from the catchment area within 3 years, children with disabilities at birth or who remained in the hospital more than 7 days postpartum, and mothers not sufficiently conversant in English. During selected 24-hour sampling periods, all 8,986 women who gave birth at the selected hospitals were screened, and of those screened, 5,416 met the eligibility criteria for the study. From that group, 1,364 children and their families became the NICHD SECCYD sample upon completing a home interview when the infants were one month old, and they have been followed over the past 19 years. At enrollment, mothers had an average of 14.4 years of education and were an average age of 28.11 years old; 20% of the study children were in minority racial/ethnic groups and 52% were males. Data collection methods for the SECCYD study included observations, interviews, questionnaires, and testing. To ensure the integrity of the data collection process, multiple procedures were implemented . For example, those involved in the data collection process were provided with identical training materials and manuals. Research visitors also participated in centralized training workshops and submitted videotaped examples of several administrations of each measure for certification . The timing of data collection for the SECCYD study was guided by multiple developmental theories including life course perspective and primacy of early experience hypothesis . Additional details about recruitment and selection procedures are available in prior publications from the study ) and in the study web site . --- Measures Measures used to identify socioeconomic disadvantage/advantage-Mothers reported their own age and education at target child's age of one month. Presence of biological father in the home family during early childhood was assessed by interview separately at 1, 6, 15, and 24 months, and then combined into a single derived variable for the present study. At each interview, mothers reported whether or not they lived with the biological father of the study child . We calculated a proportion of the interviews that mothers responded 1 to this item. Economic status during early childhood was an average of income-to-needs ratios at 1, 6, 15, and 24 months. Income-to-needs ratios at each interview were calculated by dividing total annual household income by the U.S. poverty threshold adjusted for the appropriate family size. A lower income-to-needs ratio implied a lower degree of economic resources. --- Measures for the path analysis Antecedents to parenting during birth to 24 months: The Center for Epidemiological Studies Depression Scale was used to assess parental depression at 6, 15, and 24 months. Twenty depressive symptoms were rated on a 4-point scale at each interview . Example items included "I was bothered by things that usually don't bother me," "I felt lonely," and "I had crying spells." Responses were scored at each wave and then averaged into a single derived variable for each respondent . Parenting stress was assessed at ages 1 and 6 months with the Parenting Stress Index . Twenty-five items measuring subscales of attachment, restrictions of role, and sense of competence, were extracted from the 101-item PSI. These items were designed to identify parent-child systems under stress and were scored by parents on a 5-point scale . Example items included "Being a parent is harder than I thought it would be," "when my baby came home from the hospital, I had doubtful feelings about my ability to handle being a parent," and "it takes a long time for parents to develop close, warm feelings for their babies." The scored items were summed at each wave, and subsequently the sums were averaged into a single derived variable for each respondent . Finally, stressful life events were defined as the average number of potentially stressful family life events reported at 6, 15, and 24 months. The list of stressful life events included entrance into a new household group, exit from an existing household group, job loss of a relative or close friend, illness of a relative or close friend, death of a relative or close friend, household moves, and job loss. --- Parenting practice at 36 months of age: The stimulating home environment was assessed with the Home Observation for Measurement of the Environment . Fifty-five dichotomous items assessed the quality and quantity of cognitive stimulation and parental support available to a child in the child's home environment, and endorsed items were converted into a total score . Example items included "2 or more toys which teach colors, sizes, and shapes are available to child," "mother's voice conveys positive feelings about child," and "at least 1 musical instrument is available to the child." Parental sensitivity was measured using videotaped semi-structured procedures at the 36 month interview that assessed parenting behaviors and child behaviors . In the procedures, caregivers were asked to have their children play with toys in three containers in a specified order. The first container held washable markers, stencils, and paper; the second container had dress-up clothes and a cash register; and the third container held Duplo blocks and a picture of a model. The recorded procedures were rated by trained coders using 7-point ratings with regard to different aspects of parenting behaviors such as caregivers' supportive presence, respect for child's autonomy, cognitive stimulation, hostility, and confidence . The intraclass correlation between two coders, a measure of intercoder reliability, was .84 . For the present analysis, scores regarding three aspects of parenting behaviors including caregivers' supportive presence, respect for child's autonomy, and hostility were combined into a composite variable. Higher scores corresponded to more support, autonomy, and less hostility . Child school readiness at 54 months of age: Prosocial problem solving was based on a subset of the Social Problem-Solving Test-Revised . In the test, the child was presented with five situations relating to object acquisition and then asked what to do to handle the situations. Children's responses were coded into 15 categories of actions. For the present study, ratios of the number of responses coded as one of five positive action categories to the total number of responses were calculated and then categorized using .5 and .8 as thresholds . Of note, these thresholds were empirically derived; quartile information for the precategorized variable was used as a basis for creating these thresholds. Preschool language development was assessed with the Preschool Language Scale at the 54-month interview. The PLS-3 includes two standardized subscales: Auditory Comprehension and Expressive Communication . What children know, but may not say, is assessed in the AD whereas what children actually say is measured in the EC. The tests were administered in an order of the AD and the EC. Each item-level response was scored as 1 when the pass criterion was met or the child self-corrected a response or as 0 when the pass criterion was not met or responses were partially correct or incomplete. Scores were summed and converted into standard scores in accordance with the scale manual. Finally, inattention was measured with the Continuous Performance Test designed to assess child's sustained attention . In the test, images of familiar objects randomly appeared in a computer screen, and children were asked to press a button when they saw the target object in the screen. Once the test session begins, the stimuli are presented in 22 blocks. Ten stimuli are presented in each block. The target stimulus is randomly presented twice within each block. For children at 54 months of age the test takes approximately 7 minutes and for 1 st grade children the test takes approximately 8.5 minutes. The CPT is a widely used measure of sustained attention and has adequate test-retest reliability evidence and good predictive and discriminate validity evidence . The number of instances in which a child failed to respond to the target object was used in the present analysis. Outcome variables, early school achievement during first grade: Two tests from the Woodcock-Johnson Psycho Educational Battery-Revised , Letter-Word Identification and Applied Problems , were administered while the children were in first grade to assess early reading and math achievement. The Letter-Word Identification test includes 57 items. Symbolic learning, or the ability to match a representation of a word with an actual picture of the object, was assessed in the first five items. The remaining items were designed to assess a child's letter and word identification skills. The Applied Problems test includes 60 items assessing skills in analyzing and solving practical problems in mathematics . Correct responses were scored 1 and incorrect responses were scored 0. The raw scores, the number of correct responses, were converted into the standard score by using a mean of 100 and a standard deviation of 15 as a base. Internal consistency reliability was reasonably high for each test . --- Analytic Strategy To identify subgroups of advantaged and disadvantaged families, a latent profile analysis was carried out using Mplus 5.1. A latent profile analysis classifies individuals into subgroups based on the covariance of relevant observed indicators. More details about a latent profile analysis are available elsewhere . In line with prior studies , the number of classes chosen was based on model fit statistics, sufficient class sizes, and the theoretical meaningfulness of the solution. The four measures of family socioeconomic status described above were included as indicators of the resulting categorical latent variable. In the second analysis 1 , a path analysis, designed for estimating linear effects of paths between variables , was used to estimate the hypothesized model of the family processes and child's school readiness on early school achievement using Mplus 5.1. Based on previous research findings, parenting stress, stressful life events, and parental depression were modeled as being distal risk factors for parenting practices. Parenting practices and child's school readiness were modeled as being proximate predictors of early school achievement . First, we conducted a path analysis for the full sample. We evaluated the fit of our hypothesized path model using the Comparative Fit Index , Root-Mean-Square Error of Approximation , the Standardized Root Mean Square Residual , and a χ 2 test. Hu and Bentler recommend a CFI ≥ .95, RMSEA ≤ .06, and SRMR ≤ .08 as guidelines for acceptable fit. As for the χ 2 test, a nonsignificant χ 2 statistic indicated that the hypothesized model fit the data adequately. However, with large sample sizes, Kline recommended dividing the χ 2 by the degrees of freedom to provide adequate adjustment for having large sample sizes. With this adjustment, a value of 3 or less indicated acceptable fit. To examine whether socioeconomic disadvantage, as defined in this study, was a significant moderator of the hypothesized process, we estimated a multiple group path model and assessed whether the estimated path coefficients varied across different socioeconomic groups using a Wald test. A statistically significant Wald test in the context of the present study indicated that hypothesized processes in the model varied across different socioeconomic groups. To identify potential misfit in the hypothesized model, we examined modification indexes with caution. We were aware that additional paths identified through modification indexes can be potentially spurious. However, we concluded that it was important to examine other potential processes relevant to early school achievement. Finally, missingness in the data was handled with full-information maximum likelihood in Mplus, which has become preferable over traditional strategies for managing incomplete data . --- Results --- Latent Classes of Socioeconomic Disadvantage/Advantage Model testing for the latent profile analysis began with one, two, and three class models. Although the three-class model fit the data better than the two-class model according to the BIC values and the Lo-Mendell-Rubin Adjusted Likelihood-Ratio test value , the entropy for the three class model was .949 and the two-class model was .996. Both models identified the same disadvantaged subpopulation class as composing 17% of the sample; the three-class model identified an additional class consisting of a highly advantaged subpopulation representing the upper end of the distribution on the socioeconomic variables. This class demonstrated an average income-toneeds ratio of 9.3, an average maternal age of 33.1, 1 To examine whether there is a need to address potential cluster issue in the data, we ran unconditional means model for all seven dependent variables. Out of seven models, six unconditional model results showed nonsignificant variance in the mean of corresponding variable across sites. In addition, all the intraclass correlations were below .05 except for the home environment variable . Based on these sensitivity tests, we concluded that adjustment for sites was not needed for the current analyses. and an average education of 16.8 years, and had the biological father in the home 99% of the time. The characteristics of the disadvantaged class were very similar in two and three class models; the means of indicators of the disadvantaged group were essentially identical across two and three class models. Because the aim of this study was to examine the family process model for those in a disadvantaged group relative to the remaining sample, the two-class model was accepted based on parsimonious conceptual interpretation along with consideration of model fit to the data. Table 1 presents descriptive statistics of indicators included in the latent profile analysis for the full sample and by each latent class. Eighty-three percent of the sample belonged to the first class who, on average, had a few years of post high school education, were in their late 20s at the birth of the study child, had the biological father of the study child present in the home for the majority of the first two years of the child's life, and had an average income-to-needs ratio of 3.79. The other class composed 17% of the sample, and on average, had a high school education, were in their early 20s, lived in primarily female-headed households without a biological father for the first two years of the child's life, and had a low income-to-needs ratio of 1.29. We also examined differences between the groups with regard to parenting and school readiness using bivariate tests , which are reported in Table 1. --- Socioeconomic Disadvantage, Family Stress, Parenting, and Early School Achievement Path analyses were conducted on the full study sample and on socioeconomic groups identified in the previous latent class analysis to examine whether socioeconomic group was a significant moderator of the impact of family stress on early parenting and child outcomes. The covariance matrix for all the measures used in the path analyses is presented in Table 2. First, we conducted a path analysis for the full sample . The model fit the data reasonably with a CFI of .97 and RMSEA of .05. However, χ 2 /df = 4.9 was slightly larger than 3. For the full sample, stressful life events and parental depression predicted home environment, standardized β = -0.18, p < .001 and standardized β = -0.26, p < .001, respectively and parental sensitivity, standardized β = -0.15, p < .001 and standardized β = -0.23, p < .001, respectively. Home environment and parental sensitivity were, in turn, associated with the increased child's pro-social solving skills, standardized β = 0.18, p < .001 and standardized β = 0.14, p < .001, respectively; higher preschool language development, standardized β = .40, p < .001 and standardized β = .27, p < .001, respectively; and lower inattention, standardized β = -0.20, p < .001 and standardized β = -0.10, p =.003, respectively. Finally child's language development, inattention, and home environment were significant predictors of early reading, standardized β = 0.32, p < .001, standardized β = -0.10, p < .002, and standardized β = .10, p = .007, respectively. These three predictors, along with parental sensitivity, predicted early math achievement, standardized β = 0.51, p < .001, standardized β = -0.11, p < .001, standardized β = .07, p =.026, and standardized β = .08, p =.014, respectively. This model explained 20% of the variation in early reading achievement and 37% of the variation in early math achievement. Next, we conducted a path analysis by socioeconomic group . First, the model identified for the full sample was tested within a multiple-group analysis framework . Fit statistics for the multiple group model resulted in a χ 2 /df value of 2.97 with a CFI value of .96 and a RMSEA value of .05 indicating a good model fit. Next, to explore potential unidentified processes, we examined the modification indices. According to the modification indices, a model fit could be improved by adding two additional paths to the model in the context of the multiple group analysis. Within the Advantaged group, a pathway between stressful life events and preschool language was statistically significant, and within the Disadvantaged group, a pathway between parenting stress and preschool language was statistically significant. We added these paths to the model, and the improvement in fit was significant, Δχ 2 = 13.01, df = 4, p < .05. These additional paths were added to both groups in order to compare these paths between groups using Wald tests. Fit statistics for this re-specified model indicated a reasonable model fit to the data . Results are represented in Figure 2. In the Disadvantaged group, only parenting stress was a significant predictor of parental sensitivity, standardized β = -0.19, p =.034. Parenting stress, depression or stressful life events did not, however, predict the home environment. Both of these findings were unanticipated, especially the finding that depression was not predictive of parenting sensitivity. A follow-up analysis was conducted to assess a potential suppressor effect between depression and parenting stress that may influence the impact of depression on parenting sensitivity, which will be discussed further below. The correlation between parenting stress and depression was statistically significant and stronger for those in the Disadvantaged context than it was for those in the Advantaged context . We examined the model without parenting stress and found that depression had a statistically significant impact on both the home environment and parental sensitivity , both follow-up analyses provide evidence of a suppressor effect between depression and parenting stress, but it is evident only for those in the Disadvantaged group. Home environment predicted pro-social problem solving, standardized β = 0.29, p < .001, and child's language development, standardized β = 0.43, p < .001. Parental sensitivity was associated with child's improved language development, standardized β = 0.27, p < .001, and decreased inattention, standardized β = -0.18, p = 043. Parenting stress also predicted child's language development, standardized β = -0.13, p = .037. Child's language development, home environment, and parental sensitivity were significant predictors of early reading achievement, standardized β = 0.19, p = .038, standardized β = .21, p = .017, and standardized β = .20, p = .012, respectively. Child's language development and parental sensitivity predicted early math achievement, standardized β = 0.42, p < .001 and standardized β = 0.23, p = .001, respectively. This model explained 25% of the variation in early reading and 44% of the variation early math achievement for the Disadvantaged group. For the Advantaged group, stressful life events and parental depression were negatively related to both home environment, standardized β = -0.14, p < .001 and standardized β = -0.22, p < .001, respectively, and parental sensitivity, standardized β = -0.10, p = .002 and standardized β = -0.21, p < .001, respectively. Home environment and parental sensitivity predicted child's pro-social problem solving, standardized β = 0.13, p < .001 and standardized β = 0.13, p < .001, respectively. Home environment, parental sensitivity, and stressful life events predicted child's language development, standardized β = 0.35, p < .001, standardized β = 0.26, p < .001, and standardized β = -0.07, p = .02, respectively. Home environment and parental sensitivity predicted inattention, standardized β = -0.21, p < .001 and standardized β = -0.08, p = .021, respectively. And in turn, child's language development, inattention, and home environment predicted early reading achievement, standardized β = 0.34, p < .001, standardized β = -0.09, p = .008, and standardized β = 0.08, p = .041, respectively. Only child's language development and inattention problem predicted early math achievement, standardized β = 0.51, p < .001 and standardized β = -0.12, p < . 001, respectively. This model explained 17% of the variation in early reading achievement and 33% of the variation in early math achievement for the Advantaged group . As noted previously, we used Wald test, which, if statistically significant, indicates that estimated path coefficients vary across two identified socioeconomic subgroups. The following paths yielded statistically significant difference across groups: parenting stress to parental sensitivity, χ2 = 5, df = 1, p = .025, parenting stress to language development, χ2 = 6.65, df = 1, p =.01, stressful life events to preschool language, χ2 = 4.07, df = 1, p = .04, and parental sensitivity to early math achievement, χ2 = 4.91, df = 1, p = .03. --- Discussion The purpose of this study was to assess the effect of family processes , as they varied by socioeconomic context, on academic achievement. The theoretical model proposed identified which risk and protective factors would be moderated by socioeconomic context and which factors would not be moderated by socioeconomic context. Of prime interest was how family processes support academic achievement within a disadvantaged context because of significant policy, prevention, and intervention implications. Identifying specific and malleable family processes that support achievement will improve both policy and services to families with fewer socioeconomic resources. Without a clear understanding of how family processes operate within a disadvantaged context, prevention and intervention targets may be misaligned with actual needs of struggling families. The full sample path analysis results indicated that the proposed theoretical model performed as expected with a few exceptions. All model pathways proposed were statistically significant in the expected direction with the exception of parenting stress and prosocial problem solving. Thus, the full sample, a more generalized sample, demonstrated constructs form both the Family Investment Model and Family Stress Model predicted lower scores in parenting and that parenting predicted higher scores in readiness, which resulted in higher scores on early school achievement. These findings echo what we already have seen in the literature, that school readiness appears to be very important to school achievement, thus focusing intervention efforts on promoting school readiness, for generalized samples should improve overall school achievement . Similar to what others have found , the effects of parenting practices were fully mediated . The primary aim of this study, however, was to examine variation in family processes by socioeconomic context. The results clearly indicated that risk and protective factors associated with family processes operate differently depending on context. Specifically, for those in the Disadvantaged context, parenting stress significantly reduced parenting sensitivity as well as preschool language performance whereas for those in the advantaged context, parenting stress did not emerge as an statistically significant predictor. Although these effects were considered small, it is interesting that parenting stress during the first 6 months had an enduring effect on parenting sensitivity at 36 months and on preschool language at 54 months, even after adjusting for other potent variables. The mean difference in parenting stress between those in Advantaged versus Disadvantaged contexts is informative , showing that Disadvantaged families experience more parenting stress. This finding is important because parenting stress reduces sensitivity which has both a direct and mediated protective effect on achievement, but this finding only surfaced for those experiencing socioeconomic disadvantage. In particular, parental sensitivity had a significant direct effect on math achievement for those in the Disadvantaged context, this effect was not evident in the more Advantaged sample. Reflecting on the results in the full sample, which showed a very small effect of parental sensitivity on math achievement, when the samples were analyzed separately it became clear that this protective process was more evident in the Disadvantaged group. The protective effects of parental sensitivity maps onto the resiliency literature quite well; that is, children in families exposed to adversity fare better when there are supportive and strong family processes in place . Given that parental sensitivity operates in a particularly protective manner for students in the Disadvantaged context, prevention efforts aimed at supporting students and their families from a disadvantaged socioeconomic background should pay attention to parental sensitivity during the the earliest years of life. Alternatively, quality of the home environment, operated in the same way for both Advantaged and Disadvantaged groups, suggesting cultivating, more broadly, quality in the home environment is important regardless of differences in students' socioeconomic contexts, and thus should be a target for universal prevention programs. Finally, with regard to other stressors that parents might experience including depression, parenting stress, and stressful life events, we were surprised to see that depression was not predictive of parental sensitivity in the Disadvantaged group. As noted, we suspected a potential suppressor effect between parenting stress and depression, given the strong correlation of these indicators in the Disadvantaged group. Results of our follow-up analysis indicated that indeed there is evidence of a suppressor effect between depression and parenting stress for those in the Disadvantaged group. This result suggested that parenting stress and depression, for the Disadvantaged group, were more entangled than they were for the Advantaged group. Thus, we concluded that parenting stress was more potent for those experiencing socioeconomic disadvantaged in part because of its embedded relationship with depression. This view is supported by Chang and Fine's research, using a sample of low-income adolescent mothers, on growth trajectories of parenting stress from infancy to preschool. They found that depression was the only parental factor that differentiated mothers' growth trajectory of parenting stress, and it was in the expected direction. Another interesting finding in the current study was that the stressful life events measure was a significant predictor of preschool language for the Advantaged group but not for the Disadvantaged group. As noted, this relation was not initially hypothesized or modeled; yet we thought it worth noting. We had expected that stressful life events would be more potent for those in the Disadvantaged group. Indeed, those in the Disadvantaged group experienced significantly more stressful life events. We examined this result closely and looked for potential suppressor effects but did not identify any. We thus caution readers that this result needs further exploration and consideration. --- Limitations of the Study We note some limitations of this study. The NICHD SECCYD sample is not nationally representative. Some potentially disadvantaged families were excluded from the study at the beginning . Thus, the subsamples defined in this study represent relative disadvantage and advantage as measured in this sample. Those in the Disadvantaged sample had, on average, 23 years of age, which is not as young as one might find in a sample that, for example, included a large number of adolescent mothers. Nevertheless, Bornstein, Putnick, Suwalsky, and Gini found that parenting practices significantly improve, in a linear fashion, with parental age for younger mothers under the age of 27 when age is no longer a predictor of parenting practices. Taken together, caution in generalizing these results to other populations is necessary. The proposed model should be replicated in another sample, preferably one with a greater number of disadvantaged participants who were potentially excluded from this study due to the selection criteria. Finally, the measure of stressful life events was a measure of events that were conceptually associated with increased stress. All events were summed and treated equally, and thus, potential individual variation in perception of a specific life event as stressor was not captured. This individual difference could be fruitful in future studies examining familiy process. --- Conclusion As noted by Bradley and Corwyn , a model that includes the effect of moderating factors will help identify which processes are more or less significant to populations of interest, and in the case of inconsistent findings in the literature, moderator models may be particularly informative. Assessing family processes as they are moderated by socioeconomic context may disentangle inconsistent findings in the literature as well as expose processes that may be malleable and suited to particular types of targeted interventions. In this study, we found family processes to be significantly different between socioeconomic groups. The implication is that interventions should be informed by and then tailored to the needs and stresses particular to the context of the recipients. This recommendation is relevant for those engaged in research as well as those working with children in the educational system. School psychologists, teachers, and administrators interact with children every day who are struggling to succeed. Many children enter school at a significant academic disadvantage that is evident long before formal school entry and remains relatively stable . Yet, educational professionals, school psychologists, and teachers serving children K-12 have the task of averting school failure even though we know the process that predicts problems begins prior to school entry and prior to the availability of services designed to improve achievement trajectories. The current findings demonstrate the importance of family processes in students' school achievement. Prevention efforts focusing on family processes in early childhood may stave off the need for school age intervention and expenditures related to academic underachievement. Also, cultivating the connection between school settings and families can enhance educational professionals' capacity to promote students' school success. Studies have consistently reported that the success of effective early childhood intervention programs stem from their multifaceted program focus. Successful programs have not only intervention components directly targeting at students' educational achievement but also program components nurturing sensitive and stimulating caregiving practices and mitigating families' stress . Moreover, prevention and intervention services during the birth-to-three developmental period have show that parental sensitivity, in particular, is malleable and responsive to interventions . Developing a deeper understanding of the developmental pathways toward school achievement and acknowledging influences of broader ecological contexts other than educational settings on school success will improve educational professionals' capacity in guiding educational policy, intervention, and prevention efforts. Dashed lines represent pathways hypothesized to be statistically significantly different by socioeconomic group status . All dashed pathways are hypothesized to be stronger in the Disadvantaged group relative to the Advantaged group. For the within-group path analyses results, only statistically significant standardized effects are show: *p < .05, **p < .01, ***p < .001. For the multiple-group path analyses results, paths that vary between groups are marked by dashed lines.
This longitudinal study examined a model of early school achievement in reading and math, as it varies by socioeconomic context, using data from the NICHD Study of Early Child Care and Youth Development. A conceptual model was tested that included features of family stress, early parenting, and school readiness, through both a single-group analysis and also a multiple-group analysis. Latent profile analysis was used to identify subgroups of more advantaged and less advantaged families. Family stress and parenting were shown to operate differently depending on the socioeconomic context, whereas child-based school readiness characteristics were shown to operate similarly across socieodemographic contexts. Implications for intervention are discussed.
Parental Involvement in the U.S According to theoretical models, parental involvement in education occurs at home , in the community , and at school . Such behaviors are thought to support children's achievement through scaffolding, support, and reinforcement, and they are a mechanism by which parents manage opportunities for children, are integrated into schools and communities, and develop a sense of agency and empowerment in societal institutions more broadly. Evidence supporting these processes has helped to create a model of intensive and visible parental involvement that dominates discourse in U.S. schools . This model has been especially embraced by White middle class parents as part of the general intensification of their strategic investment in their children's futures over the last several decades. Given their status within U.S. schools, what they model as involved parenting tends to shape the expectations that school personnel have of all parents . These sociodemographic disparities in parental involvement have fueled educational policies, such as the federal education legislation known as No Child Left Behind, aiming to increase the involvement of parents from historically disadvantaged populations . In general, two sets of obstacles tend to reduce their involvement relative to White middle class parents. The first concerns practical constraints that keep parents from fully acting on their parenting values, such as logistical demands on time and inadequate access to resources . This set of obstacles is more pronounced for racial/ ethnic minority parents. Not only are they more likely to be socioeconomically disadvantaged, they are also affected by segregation, which interferes with the availability of community-based activities, and by discrimination and disenfranchisement, so that their demands for interactive time with teachers or a greater role in school affairs are often unanswered . The second set of obstacles concerns cultural mismatches-when parents and educators work from different assumptions about how to serve the best interests of children or have different perceptions of their roles vis-avis one another. Such mismatches can occur when parents from low-income and/or racial minority groups have a parallel conception of family-school connections while educators from different backgrounds have a synergistic conception that involves coordinated efforts across domains and settings. Importantly, these mismatches may occur even when such parents are paired with educators of similar backgrounds if those educators have internalized written and unwritten norms of parental involvement in education that reflect the dominant White middle class culture . Latin American immigration is a critical lens through which to study disparities in parental involvement in the U.S. Latino/a immigrants tend to engage in lower levels of many dimensions of involvement. These disparities reflect many of the same practical constraints discussed above as well as immigration-specific constraints like language barriers that tend to be even more acute among immigrants from Latin America than immigrants from other regions. Importantly, they also seem to be rooted in cultural mismatches reflecting the nature of immigration. Specifically, Latino/a immigrants often have little familiarity with U.S. schools and, therefore, less knowledge of the "rules" that operate within them. This lack of familiarity is important given that the model of active involvement entrenched in U.S. education is less representative of educational systems in Latin America and because the negative stereotyping of the educational orientations of Latino/as is worse than those of other immigrant groups, particularly those from Asia and Africa . Given the importance of parental involvement in U.S. education due to its power to support children's learning as well as the tendency for schools to reward the children of parents perceived to be involved, involvement disparities between Latin American immigrants and other parents are important to document. After all, programs can increase the frequency of involvement behaviors . Yet, evening out these frequencies across diverse groups will be insufficient if the nature of involvement still differs across groups; for example, if one group's involvement is embedded within the kinds of familyschool partnerships that appear to be most conducive to children's academic success while another's is not elicited, accepted, matched, or supported by the school . Thus, research on disparities in parental involvement needs to go beyond documenting quantitative differences across groups to better understand the substance and context of the involvement behaviors that do occur within the most vulnerable groups. Latin American immigrants may be at a double disadvantage, facing more obstacles to getting involved in their children's education but also deriving less benefit when they are involved . --- Focusing on Early Childhood Education Support for our general argument for understanding immigration-related disparities in parental involvement as a point of cross-cultural contact between home and school comes from theory and evidence concerning elementary and secondary school students. How it extends to early childhood education is less clear. This extension into early childhood education is important for two reasons. First, how children fare in early education programs is crucial to school readiness, and disparities in school readiness have an outsized role in long-term inequalities in educational attainment in the U.S. and other countries . Thus, identifying and unpacking the correlates of such disparities, such as group differences in parental involvement in early education, provides leverage for efforts aiming to remedy unfolding educational disparities. Second, early education is a setting in which many parents from culturally and economically marginalized populations learn about how schools work and come to see the importance of making educators understand who they are, what they believe, and what their children need. Thus, understanding how immigrant parents interact with early childhood educators-especially immigrant groups, like Latino/as, that have low rates of educational attainment and English proficiency and face high levels of discrimination-offers a glimpse into foundational experiences on both sides that set the stage for ongoing connections between immigrant families and U.S. schools . In this spirit, we test whether disparities in the frequencies of several types of parental involvement related to Latin American immigration in the U.S. extend down into early childhood education, above and beyond the socioeconomic disparities related to this immigration stream. We then explore what is going on within interactions between the most socioeconomically disadvantaged Latin American immigrants and early childhood educators that might elucidate the obstacles that prevent them from getting the most of their involvement. --- Method ECLS-B is a nationally representative birth cohort of 10,700 children followed from 9 months of age through the first year of formal schooling, which is called kindergarten in the U.S. . Our analytical sample was restricted to children who participated in the preschool wave at age 4, attended a formal education program during this wave, and had a White, Black, or Latina mother . With these restrictions, the final sample included 3,900 families . The qualitative data came from Cole, which housed pre-kindergarten classrooms from six schools in the large and diverse Southwest Independent School District in Texas. As background, any child in Texas who comes from a low-income family or who is an English language learner can enroll in free pre-K at age 4. Some SWISD schools did not have the capacity to house their pre-K classrooms, and so Cole became a pre-K campus with 26 classrooms serving 600+ kids. For this data collection, investigators conducted classroom quality observations , interviewed teachers in each classroom, and conducted group and individual interviews with 25 mothers across classrooms. Reflecting the demographic composition of the pre-K program, almost all mothers were foreign-or U.S.-born Latinas, primarily low-income and Spanish-speaking, and two-thirds of the teachers were Latinas, primarily U.S.-born and bilingual. --- Quantitative Measurement Race/ethnicity and immigration status-Mothers' reports of race/ethnicity and nativity were cross-classified to identify our focal group of foreign-born Latinoa parents . To compare this focal group with the historically least and most advantaged segments of the U.S. population, we categorized U.S.-born White and U.S.-born Black parents and then also foreign-born White and Black parents. To gauge assimilation among Latinas, we also identified U.S.-born Latina parents. Among all Latinas, foreign-born mothers mostly came from Mexico and Central or South America . One in six U.S.-born Latinas originated from Puerto-Rico . Home language was highly correlated with foreign-born status. Roughly 90% of foreign-born Latinas spoke a language other than English at home compared . Of the foreign-born Latinas who spoke a language other than English at home, 61% reported that they did not speak English well. Because of this overlap between language use and immigration status , we had to drop it from our main analyses , although we did conduct some ancillary analyses with this factor. Parental involvement-Involvement was measured following past work with ECLS data . Cognitive stimulation summed 3 items from the Home Observation for Measurement of the Environment on a 4-point Likert scale : how often parents read books, told stories, and sang songs with their child . Extracurricular activities summed 7 binary items , such as performing arts, crafts, and athletics . Preschool involvement summed parent reports of whether they had participated in 5 preschool/center-based activities , such as attending parent-teacher conferences or volunteering in the classroom. Socioeconomic status-Mothers reported their educational histories and household income . Income was analyzed in conjunction with a count of household size. Children's academic skills-Although our focus was on parenting as outcomes, we also extended the main models to examine children's reading and math skills at age 4 as outcomes. These factors were measured with an assessment developed for ECLS-B . Content from the reading assessment covered letter recognition, early reading, and phonological awareness. The math assessment covered number sense, properties, and measurement. Because these assessments were highly correlated , we summed them . Covariates-To reduce demographic variability and the possibility of spurious associations, all analyses accounted for a key set of covariates: parents' marital status, maternal age, mothers' employments status, household size, number of siblings, child gender, child age, children's age two cognitive skills as measured by the Bayley Scale of Infant Development , urbanicity, and region. --- Plan of Analyses Beginning with the quantitative analyses of group differences in the frequency of parental involvement, models regressed the parenting outcomes on the race/ethnicity and immigration variables and the covariates. These Mplus models included: 1) longitudinal weights, ensuring that the sample was representative of U.S. children and addressing differential attrition across waves, 2) clustering and stratification variables to adjust standard errors as a result of the clustered sampling frame, and 3) multiple imputation to ensure that all cases were retained. To give a sense of how much apparent disparities related to race/ethnicity and immigration were linked with socioeconomic differences across diverse groups, these models of involvement included socioeconomic indicators as predictors. We also formally tested the degree to which socioeconomic indicators mediated the associations of race/ethnicity and immigration status with the parental involvement outcomes using the zstatistic from the Sobel Test . One complication was that the sample of children attending early childhood education programs at age 4 demographically differed from children who were not in this sample because they were not so enrolled. To address bias related to this differential selectivity, we calculated propensity scores gauging the probability of enrollment based on children's preacademic and behavioral skills, child and family demographics, household characteristics, and a set of interactions between some of the key socioeconomic and demographic variables. The predicted odds of being in enrolled in preschool were then outputted and saved as a new variable, which was included as a covariate in all subsequent analyses. Effectively, this approach combined propensity score weighting, which improves on the traditional propensity score matching approach by allowing all cases to be retained , and Heckman two-stage modeling, which corrects for sample selectivity . Turning to the qualitative analyses, we relied on guidelines from Miles and Huberman . All Cole interviews and field notes were transcribed and content-coded by personnel trained to an acceptable level of agreement through a central coding scheme based on a master codebook iteratively constructed based on randomly sampled transcripts. This codebook included both a priori and emergent themes. A set of nearly a dozen tree-coded themes on parental involvement organized the coding, and these data were then sorted by parents' immigration status and teachers' race/ethnicity and immigration status. --- Results --- Quantitative Comparisons of Parental Involvement Table 2 presents results from regressions predicting the parenting outcomes. Model 1, which included race/ethnicity and immigrant status and the full set of covariates , revealed that foreign-born Latinas scored significantly lower on two measures of involvement than U.S.-born Whites. They engaged in less cognitive stimulation with their children at home and were less likely to enroll children in organized activities in the community . The exception was that foreign-born Latinas were more likely to be involved in their children's preschools than U.S.-born White parents. We repeated these analyses by rotating the reference category for the race/ethnicity and immigration status dummy variables to capture all pairwise comparisons . Foreign-born Latinas scored significantly lower on cognitive stimulation at home and extracurricular activities in the community than U.S.born Latinas, with differences corresponding to 26% and 34% of a standard deviation respectively, as well as foreign-born Blacks and foreign-born Whites . The only significant difference between foreign-born Latinas and U.S.-born Blacks, however, was for extracurricular activities. Model 2 added the socioeconomic variables as potential mediators. Maternal education and household income both predicted each outcome, with effect sizes ranging from 7-17% of a standard deviation depending on the socioeconomic indicator and outcome. Importantly, these indicators explained large portions of the Model 1 disparities in the parenting outcomes between foreign-born Latinas and U.S.-born Whites ; for example, 58% of the difference in extracurricular activities and 41% of the difference in cognitive stimulation. Furthermore, when accounting for socioeconomic status, the difference in preschool involvement between foreign-born Latinas and U.S.-born Whites doubled in size. These disparities were similarly attenuated when comparing foreign-Latinas with U.S.-born Latinas and foreign-born Whites but not with foreign-born Blacks. Despite this attenuation by socioeconomic status, foreign-born Latinas continued to score lower on these measures of involvement, and additional analyses showed that disparities among foreignborn mothers were also not fully explained by differences across groups in mothers' English language use. To gauge the significance of these disparities, we conducted supplemental models demonstrating that measures of parental involvement significantly predicted children's achievement test scores at age 4 and that their inclusion attenuated the associations of the race/ethnicity and immigration status dummy variables with test scores. For example, the children of foreign-born Latinas scored roughly 15% of a standard deviation below their classmates of U.S.-born White mothers on academic test scores. After accounting for the involvement behaviors, the overall level of attenuation of these differences was 10%, and Sobel tests revealed that cognitive stimulation , home resources , and preschool involvement were significant mediators of this difference, individually and collectively. In sum, foreign-born Latinas scored lower on home-and community-based aspects of parental involvement in children's early education than almost all other groups studied, including U.S.-born Latinas and other immigrant parents. These patterns were mostly, but not entirely, a function of systematic differences in socioeconomic status across racial/ethnic and immigration groups, with some portion leftover to be accounted for by other factors, such as cultural mismatches. The one exception was that foreign-born Latinas were actually more likely than other groups of parents to participate in preschool-based involvement. Notably, these disparities in parental involvement appeared to have implications for children's academic achievement. --- A Qualitative Exploration of Parental Engagement Documenting that Latina immigrants had lower frequencies of some involvement behaviors than mothers of different race/ethnicities and/or immigration statuses and higher frequencies of other behaviors is only part of the endeavor to understand parental involvement in this population. We need to better understand these behaviors within the context of familyschool transactions, which help to translate parental involvement into benefits for parents and children. Following recent mixed methods work on immigrant families, we did so by supplementing the quantitative cross-group analyses of population data with qualitative within-group exploration of local data . The goal was to unpack the nature and substance of involvement behaviors in the focal group of Latin American immigrants within a specific educational context in order to elucidate what their levels of involvement mean. The most intriguing finding to emerge from this exploration concerned the tendency for Latina immigrants and their children's teachers to value family-school partnerships in spirit but "execute" these partnerships in ways that could blunt their positive effects. To begin, the parents and teachers emphasized the importance that they placed on working together to support children's learning. As one mother explained, children succeeded when home and school were in sync with each other: "Yes, we make a good team." In addition to this teamwork talk that pervaded all discussions at Cole, we were struck by how often Latina immigrants used phrasing commonly seen in early childhood education about parents serving as home teachers who worked with school teachers to help children get the most out of their learning experiences. As one mother remarked: "She's very happy and also because when there are three teachers in the classroom. Well I'm not a teacher , you know, both of the teachers and including the mother, the child learns more and he enjoys it as well." What became clear was that much of this vocabulary emphasizing active parental involvement reflected the influence of Cole's parent support specialist. She was Latina herself and tried to be an advocate for Latina immigrants, and she spent substantial time working with teachers to connect them to mothers. Still, the role of this one figure aside, the consistency and intensity of this brand of involvement talk at Cole was striking given past research suggesting that Latina immigrant parents are intimidated by school personnel, who, in turn, are often ambivalent about working with such parents. Consider, for example, educaciòn, the parallel conception of involvement mentioned earlier that positions children's moral and social education as a parent's duty and academic education as a teacher's duty. The Latina immigrants at Cole rejected this idea and claimed that academics were also in their domain, requiring that they work with teachers across home, community, and school settings. Yet, digging into the substance of interactions between parents and teachers who said that they were working together revealed something different from partnerships based on mutual collaboration and respect. Instead, they were more like parents working for teachers, with mothers helping children with teacher-assigned schoolwork with little room to extend that schoolwork with new activities or different learning experiences. For example, if children were practicing reading at Cole, teachers required mothers to practice reading with them at home on the same level, and they did not encourage mothers to take kids into new reading activities or working on something else, like numbers, or recognize the benefits when mothers did. What was done at home was within the confines of what was being done at school. Helping with homework at home was the primary way that teachers wanted to involve parents, and it was the primary way that parents thought that they were encouraged to be involved. One mother noted what she thought a good teacher would do: "Like send homework, so you can have something to do with them." Another explained: "When she started the school year, [she] sent us all a list about everything they were going to see throughout the year…she sent it at the beginning of the school year…you know what they're going to learn all year long and nothing else. So, all I'm saying to you is that it's a way to help the teacher since you already know what they're going to be learning the entire year." How parents got involved outside or inside the school was not coordinated but directed , in part because that is what teachers wanted and in part because parents did not think that they had the agency to go beyond. Indeed, the most common parentteacher meeting involved teachers telling parents what they wanted them to do, with little opportunities for mothers to tell teachers what they wanted them to do. As one Latina mother explained what she needed from teachers: "Like having conferences amongst teachers, parents, and principals. Conferences where you talk more about the child, what he/she needs to learn and what they're going to send home." Because Latin American immigrant mothers were less familiar with the U.S. system, they appeared to be more responsive to teacher direction, but, given the foundational role of early education in the system, this initial stance could be self-propagating over time, which means that teachers would also not be getting socialized into what true family-school partnerships mean. --- Conclusion The purpose of this special issue is to explore how immigrants adapt to diverse cultural settings. We argue that the interactions of Latin American immigrants with their children's early education teachers are a meeting point of cultures. Conflict and alienation around this meeting point may undermine the future educational prospects of immigrant children and the future interactions of parents with societal institutions, which is the downside, but this meeting point can also be an opportunity for natives and immigrants to socialize and support each other in mutually beneficial ways, which is the upside . We also argue that a mixed methods strategy is a useful way to explore this cultural intersection. Pairing statistical cross-group comparison in extant national data with the qualitative exploration of within-group processes in locally collected data is not common in psychology, but it can be a powerful tool. It allows for the basic population parameters of inequality to be established in a generalizable way but then unpacks those population parameters into insights about special vulnerabilities and resiliencies that are difficult to see in surveys. What did this strategy reveal? First, the ECLS-B findings were generally in line with expectations about group disparities in the frequency of involvement behaviors. Latina immigrants scored lower than other mothers on measures of community and home involvement but higher preschool-based involvement . The selectivity of immigrant families who enrolled children in early childhood education could have been a factor, but our statistical efforts to address this selectivity did not change the quantitative results. Early education programs might be better at outreach to immigrants than elementary or secondary schools. After all, cultural responsiveness is central to developmentally appropriate practices, the dominant organizing philosophy of early childhood education. As a result, early educators might be more adept than K-12 teachers at drawing out the strengths of immigrant parents, and immigrant parents might be less intimidated by the former than the latter. Because school-based involvement includes concrete behaviors at specific times , it might be more easily structured by school outreach than involvement behaviors that require a more diffuse use of time and effort, such as home-based learning activities . Notably, these disparities in parental involvement in ECLS-B were related to the school readiness of children, which we know forecasts longterm educational inequality . Second, the Cole results shifted away from disparities themselves to focus on the most vulnerable group in these disparities-Latin American immigrants-and turned from considerations of the frequency of involvement activities to their substance. On first glance, the Latina immigrants at Cole appeared to be exemplars of family-school partnerships. They viewed themselves as integral to the education of their children and thought that they and their children's teachers were on the same team. On closer inspection, these partnerships appeared to be more unidirectional and shallow. This disconnect between partnership talk and actual involvement activities is problematic because it suggests that the many resources and strengths of immigrant parents were not being capitalized on, that children were not receiving the full scope of diverse learning experiences across settings made theoretically possible by the meeting of cultures, and that immigrant mothers were being socialized into a more passive and less empowered stance vis a vis societal institutions. Thus, even when Latin American immigrants were involved, they appeared unlikely to realize the full benefits of involvement . The need moving forward, therefore, is not just to increase the involvement of Latin American immigrants in children's early education but also to work on what that involvement entails-on the part of both parents and teachers. Many community organizations and advocacy groups are working on this need . Progress can have a legacy in several ways: 1) making the introduction of immigrant parents to U.S. institutions a positive experience that helps them take advantage of the services and organizations available to them in the future, 2) modeling for children how cultural exchanges can be respectful and mutually beneficial, and 3) ensuring that parents and teachers are on the same page early on so that immigrant children succeed during a critical stage of schooling.
For many immigrants, their children's schools offer their first sustained interaction with the major societal institutions of their new countries, and so exploring the ways in which immigrant parents manage their children's educational experiences offers insight into how they adapt to new cultural norms, customs, and expectations and how they are treated in return. This study delved into the involvement of Latin American immigrant parents in U.S. education, shifting the traditional focus down from elementary and secondary school to early childhood education. Statistical analysis of nationally representative data revealed that Latina immigrants had lower frequencies of most home-and community-based involvement behaviors than U.S.-born and foreign-born parents of varying racial/ethnic backgrounds but higher frequencies of involvement behaviors requiring participation in early childhood education programs. As a window into these national patterns, qualitative data from an early childhood program in an immigration-heavy state revealed that Latina immigrant mothers and their children's teachers often talked about each other as partners in supporting children's educational experiences but that their actual interactions tended to socialize mothers into being more passive recipients of teachers' directives.Immigrant parents; parental involvement; early childhood education Immigration between Latin America and the U.S. is the largest migration stream in the world. Often depicted as a clash of cultures, it is politically and socially contentious (Chiquiar & Salcedo, 2013). Increasingly, early childhood education programs are a flashpoint in this issue. They are often the introduction for Latin American parents and children to major institutions that will shape their lives. Research on non-immigrant populations has revealed that preschool teachers socialize parents into the behavioral norms of U.S. schools, including expectations that parents be visibly involved in school and classroom affairs. This socialization is relevant to Latin American immigrant parents, who
Introduction Deliberate self-harm , both fatal and nonfatal, is one of the most challenging public health issues in the Sundarban region, West Bengal [1,2]. It is reported that one-year incidence rates from population surveys of nonfatal DSH ranged from 700 to 1,100 per 100,000 people, and life-time prevalence rate ranged from 720 to 5,930 per 100,000 persons [3]. Nonfatal DSH is 10 times more common than suicide [4]. In India, about 100,000 persons commit suicide every year, which is approximately 10% suicides in the world [5]. Suicide is among the top ten causes of death in India and among the top three causes of death among those between 16 and 35 years [6]. Indian research on DSH [7][8][9][10][11] has focussed on the positive association of various sociocultural and environmental factors with suicidal behavior, thereby highlighting the importance of community-based psychosocial intervention. Suicidal deaths are preventable if sufficient knowledge and understanding of this maladaptive behaviour can lead to timely intervention. Recent suicide prevention programmes address this intervention aspect as one of the top priority public health agenda. The present study is an attempt at understanding DSH behaviour, both fatal and nonfatal, and its preventive approach from the community perspective at a primary care setting and thereby devising a preventive methodology based on community-based participatory research in the remote Sundarban Delta region. Sundarban is the southern coastal region of the Indian state of West Bengal and is the largest delta of the world . The West Bengal portion comprises 19 community developmental blocks-13 in the district of South 24 Parganas and the rest in North 24 Parganas. Each block has one main clinical facility-a block primary health centre . There are 54 islands spread over an area of 1630 square miles, intersected by numerous canals and tidal creeks. Human habitation is protected by man-made earthen embankment of over 3500 km. Majority of the inhabitants are dependent on agriculture and fishing . The ecological character of this region is largely responsible for its remoteness, backwardness , and varieties of psychosocial community stresses [12]. Both the literacy rate and per capita income are much lower than the state average. In recent years, pesticide-related deliberate self-harm, both fatal and nonfatal, was recognised as an emerging public health problem in the Sundarban [13]. We carried out a 2-yr retrospective and 4-yr prospective study of DSH cases admitted to Dwariknagar BPHC of Namkhana block of Sundarban under South 24 Parganas district, as a part of ongoing community mental health service programme in the region [14]. The objective of the present paper was to follow the community-based participatory research and thus to assess the perception of community ) of the Namkhana block about the causes and potential solution to prevent the enormous load of morbidity and mortality from DSH suicide in the region. The insight gained by studying community's perception and opinion about pesticide-related DSH suicide was utilised to develop community action agenda including training modules and IEC materials on DSH-suicide prevention. --- Materials and Methods --- Ethical Approval. The study protocol was approved by the Ethical Committee of Department of Health and Family Welfare, Government of West Bengal and Panchayat Samity, Namkhana Block, South 24 Parganas. --- Study Area. Namkhana is the most southbound island block of eastern Sundarban region at the Bay of Bengal with a population of 160627 and 7 Gram Panchayat and one Panchayat Samity-members of all are democratically elected for local self-government units. The main livelihood measures are 80% farmers, 15% fishing, and 5% others . There is one block primary health centre at Dwariknagar and 4 primary health centres in Namkhana. Different categories of health staff, both governmental and nongovernmental provide health care to the community. --- Facilitated Focus Group Discussions. A series of FGDs was conducted with farmers Panchayat members, school teachers, students, health staff, integrated child development scheme workers, multipurpose health workers , local health care providers , members of NGOs and Mahila Samity , and pesticide shop owners of Namkhana block. The data relating to only farmers and Panchayat members are presented here. 140 farmers , 124 Gram Panchayat members , and 23 members of Panchayat Samity under one Panchayat Samity. At the district level there is one Zila Parishad. Members of all these are democratically elected) were interviewed in a facilitated focus group discussion, planned in a predetermined date and place. The farmers were selected by the respective GP Pradhan , and all the Panchayat members are elected members of the Panchayat body. The themes of the FGDs were "problem of pesticide-related DSH in the block and how to prevent it. " The FGD was facilitated with a short questionnaire "opinion about pesticide-related DSH event in your locality" at the beginning of the session, which was helpful to offer the direction of the FGD to the participants. Each FGD was spanned from 1.5 to 2 hours. The FGD responses were recorded with their permission and transcribed afterwards. The responses were analysed as per the main issues and presented in the result section. --- Development of IEC and Training Materials. Based on their suggestions, a handful of IEC materials and training module addressing the DSH prevention were devised in local vernacular . For each of the materials, the drawings, content, format, and language were consulted with community groups in minute detail, so that they would be culture conducive and transmit health message in an acceptable way to the target groups. In fact, most of the contents were the verbatim of local people on these issues. Following is the list of IEC materials devised for this community-based DSH prevention in Namkhana: A feedback questionnaire was used for each IEC material from each target group, randomly selected, to assess the culture fairness and usefulness of the IEC. --- Results --- Farmers' Responses and Opinion. A total of 140 farmers attended the 11 facilitated FGDs. Pesticide-related suicidal behaviour was acknowledged as an important health problem by 76.7% farmers. 53.3% farmers store pesticide at home and among them 31.3% kept it open. 73.3% farmers purchase pesticides a week before the use. 36.7% had no knowledge of its ill effects on crops and 53.3% of its deleterious effects on the environment. 65.2% farmers said that the public education and 30.4% said that the safe storing of pesticides should be the main preventive approach against DSH-suicide in the island. 92% acknowledged the need for training on pesticide safety and good pesticide practices. --- Gram Panchayat Member's Responses and Opinion. 7 FGDs were conducted at respective Gram Panchayat offices . 95% GPM knew someone with pesticiderelated DSH or suicide in their respective villages. 86.3% endorsed it as a health problem. 88.7% GPM believed that GP has a definite role in DSH-suicide prevention by developing farmers training on safe pesticide use, active involvement of local agriculture department, reducing domestic violence, and imposing strict vigilance on pesticide sale. 80% opined that GP should be empowered to regulate pesticide sale in their jurisdictions. 97% GPM felt the need for mental health training including DSH prevention to its members as also to different sections of the community. --- Panchayat Samity Members' Responses and Opinion. One FGD was conducted at Samity office. 98% of the members said that they had no discussion on mental health ever in their Panchayat Samity, and all of them opined that Panchayat needs training on mental health. 86.7% of the members said that they knew about some cases of DSH or suicide in their locality. 80.7% members considered suicide by pesticide poisoning as a health problem in the block. An 88% of members said that each of Gram Panchayat and Panchayat Samity has a definite role to play in the reduction of pesticide-related DSH and suicide. Maximum number of members stressed the public awareness on mental health. A 76.7% of members believed that Panchayat has a role in local system of pesticide sale. 60% members were in favor of imposition of restriction on sale, and 40% suggested that there should be strict restriction on sale to young boys and girls. According to the Samity's estimate, there are about 627 pesticide shops including retailers in the block, of which only 4% are licensed. 80% members said that there were no farmers programs on safe use of pesticide organized by the Panchayat. During the last 1 year, about 492 cases were referred to different Panchayats for amicable settlement of their familial conflict including domestic violence. --- Agenda for Community Intervention. Based on the opinion expressed by the farmers and the Panchayat members, the following action plan was formulated with their endorsement: mental health clinic and community outreach service; IEC development for advocacy and training on "suicide and DSH prevention" for health staff, teachers, students, farmers, panchayat, local health care providers , and general public; IEC development on "pesticide safety" for farmers and panchayat members; and training in community psychosocial intervention skills for health staff, multipurpose health workers, Panchayat members, HCPs, and members of NGOs and ICDS workers. --- Trainings Conducted. Based on the opinions of farmers and GPMs, the following DSH-suicide prevention training was conducted with the development of appropriate training modules and IEC materials for each target group . A series of trainings with appropriate IEC materials was conducted in the block, involving the following Table 3 shows the feedback responses on some of the IEC materials from the target groups. Positive endorsement on culture fairness rating ranged from 78-98% and usefulness rating 80-100%. Figure 12 shows the BPHC admission data: The analysis of both retrospective and prospective admission data of DSH at the Dwariknagar BPHC, Namkhana, shows definite declining of incidence of DSH in the block after this preventive activity started. --- Discussion Participatory research , by definition, involves systematic enquiry in collaboration with those affected by the issue being studied for the purpose of education and taking action or effecting social change [16]. Participatory action research differs from other public health research, because it is based on reflection, data collection, and action that aims to improve health and reduce health inequities through engaging the people who take active participation and actions to improve their own health [17]. Self-harm behaviour is now becoming an urgent public health issue because of its resultant morbidity and mortality and also for its association with both individual and sociocultural factors [18]. For effective prevention, community intervention approaches are promising, as it will promote community participation and enhance responsiveness to this public health priority. This DSH prevention programme was designed as community-based participatory research , because this involvement will help to improve the quality of life and prevention of suicidal behaviours in the community by putting new knowledge in the hands of those who need to make changes. We selected the target groups and devised IEC and training materials as per the community suggestion and endorsement, and they were well accepted by the incumbents. Most of the messages in the posters were the verbatim of local people elicited during the FGDs. Training involving groups from all stockholders in the context of pesticide-related DSH and suicide was quite successful so far in its acceptance and taking responsibility in the preventive process. This approach brought the community members into the research activity as partners, not just subjects. Using the knowledge and opinion of the community to understand concept and ideas about the context and problems relating to suicide and DSH helped us to design activities that guide strategies for objective oriented preventive interventions of suicidal behaviour in the community; one such example is the shared responsibility taking by the MPHW to monitor domestic violence at each household during their scheduled home visits [19]. Active participation of HCPs in referring potential cases to the mental health clinic is another example of their active participation in the preventive process [20]. The findings on licensed pesticide shops are quite alarming, and this issue needs very serious restrictive measures to prevent easy availability of pesticides from the retail shops. It is reported that geographical isolation, economic backwardness, and dearth of health care in rural areas are related with risk factors in suicidal behaviours [21]. These psychosocial issues are quite prevalent in this remote delta region and should be addressed in the DSH-suicide prevention programme. This is a unique experience of DSH prevention work involving Panchayat and community members in Sundarban. It may be a suitable public health model for DSH prevention in agricultural communities in the developing countries. Success has been reported from community-based suicide prevention programme among some indigenous population [22]. Based on this preliminary success, we think that this model should be enacted in much bigger scale for the whole of Sundarban region, where PR should involve an intersectional approach for preventing suicide and promoting mental health, and that too should actively involve local health system and also address government policy , agricultural support , and overall community participation [23]. --- Consent Photographs in Figures 2,3, and 6 contain Panchayat members who gave written consent for tape recording of the FGDs and taking photographs for publication in academic journals or seminars. The photograph in Figure 4 is of a villager who gave written consent to use his photo in IEC materials. --- Conflict of Interests The authors declare that they have no conflict of interests. Submit your manuscripts at http://www.hindawi.com --- Stem Cells International Hindawi
Deliberate self-harm (DSH) is a major public health problem in the Sundarban region, India. This study is aimed to develop a DSHsuicide prevention programme based on the principles of community-based participatory research (CBPR). Perception and opinion of community about the problem of pesticide-related DSH and suicide were elicited in a series of facilitated focus group discussions in Namkhana block of Sundarban region. Based on their suggestion, a broad preventive programme was launched involving the development of information, education, and communication (IEC) and training modules and training of the stakeholders of the block. Most of the members of each target group found that the IEC materials were culture fair (message is acceptable, understandable, and meaningful in the local context) and very useful. Analysis of Dwariknagar BPHC, DSH admission data showed a definite reduction of DSH incidents after this CBPR approach to prevention was initiated. Similar model of DSH prevention in the other blocks of Sundarban region or in agricultural community may help to reduce the enormous mortality and morbidity from pesticide-related DSH and suicide.
Introduction The elevated occurrence of vehicle accidents in South Africa has engendered doubt over the safety of road transportation inside the nation. This phenomenon can be attributed to the significant loss of human life, as substantiated by the yearly data on road fatalities. According to the World Health Organization , the annual number of fatalities resulting from traffic accidents in South Africa is estimated to be over 1.3 million. Road accidents pose a significant risk to the socio-economic and political aspects of South African society. In numerous developing nations, road safety continues to be disregarded despite the increasing prevalence of various causes that contribute to road traffic accidents . The health sector has been notably sluggish in acknowledging road safety as a crucial public health concern. South Africa does not deviate from the norm . According to Montle and Moleke , it has been observed by the researchers that the country's economic growth has been significantly inflated due to the persistent occurrence of traffic accidents. Therefore, the rationale behind conducting this research is based on the anticipation of its significance and potential impact. The road accidents have resulted in the loss of breadwinners from low-income homes, leading to significant burden on these families. It has been emphasized by scholars that the unexpected loss of a primary income earner can have a profound impact on the well-being and mental health of the surviving family members, potentially leading to adverse effects such as illness and depression . According to Crowell , the sudden and unexpected death of a loved one resulting from tragic circumstances, such as vehicle accidents, crime, or suicide, can have a traumatic impact. This is mostly due to the absence of any prior warning, which often undermines the affected families' feelings of safety and ability to cope with the situation. The issue of fatal road accidents raises concerns regarding the effectiveness of the Road Accident Fund in addressing personal injuries sustained by third parties, while overlooking the financial implications associated with the damage inflicted on material possessions, such as the vehicles involved. It is estimated that approximately 35% of vehicles in South Africa are uninsured . Several studies have indicated that the likelihood of road fatalities is lower for those residing in urban regions compared to their counterparts in rural areas. The inclusion of supplementary research supports the assertion that individuals residing in rural areas engage in around 33% more travel compared to their urban counterparts. Furthermore, rural inhabitants exhibit a greater reliance on private transportation as a result of limited or nonexistent public transportation options . It is evident from the findings that residing in urban regions confers certain benefits in relation to road safety in comparison to rural locations. While there exists a prevailing agreement regarding the research requirements pertaining to rural road safety, it is important to acknowledge the intricate nature of this field of study. This complexity arises from the diverse array of rural road classifications, each serving distinct purposes such as facilitating accessibility, enabling inter-urban mobility, and accommodating crosstown traffic. Hence, the purpose of this study is to examine the many factors that contribute to the occurrence of road deaths within the Emfuleni local municipality in South Africa. According to Abegaz and Gebremedhin , empirical evidence suggests that road traffic accidents can be effectively prevented, as demonstrated by the successful reduction of their occurrence in numerous high-income nations. These countries have implemented interventions that have been proven to be both cost-effective and efficient. Drawing upon the notable progress achieved via the Millennium Development Goals , it is imperative to acknowledge South Africa's steadfast dedication to actively pursuing and attaining the SDGs within the designated timeframe of 2030, as highlighted in the Road Safety Report of 2019. South Africa, like the rest of the developing world, is facing massive road fatalities. Based on data provided by the Road Traffic Management Corporation , as referenced in the International Transport Forum/OECD , the number of reported road deaths in 2018 amounted to 12,921, indicating a reduction of 8% in comparison to the figures recorded in 2017. In the year 2017, a total of 14,050 individuals who were using roadways experienced fatal outcomes as a result of traffic accidents. This number closely approximated the figure recorded in the preceding year of 2016, which reported 14,071 fatalities. The elevated occurrence of Road Traffic Accidents in South Africa can be attributed to various factors, namely the prevalent presence of irresponsible driving behaviors, inadequate road networks, subpar road conditions, insufficient enforcement of traffic regulations, and the inadequate maintenance of vehicles. The primary aim of this study was to conduct a comprehensive analysis of existing literature and administer a survey to gather the perspectives of participants on the many elements that contribute to road traffic accidents in the Emfuleni Local Municipalities. The objective of this study was to administer research surveys to participants within the designated study region in order to determine their perspectives on potential causes that contribute to road deaths in Emfuleni Local Municipality. This study would provide advantages to the local municipality and pertinent stakeholders, including the Department of Transport , transportation agencies, and other safety stakeholders. The benefits would involve enhancing resource allocation and strategic decision-making processes with the aim of further decreasing road traffic accidents . The research paradigm employed in this work was grounded in the positivist tradition. As a result, a quantitative methodology was employed utilizing a cross-sectional research design. The following objectives which guide this paper are: i. To determine the potential factors contributing in traffic fatalities directly or indirectly in Emfuleni Local Municipality; ii. To identify possible relationships between the vehicle type factors and road design elements; iii. To identify possible relationships between the occurrence of main human factors and road design elements; and iv. To use the results of the research to make recommendations for decreasing RTAs. This paper is structured as follows: subsequent to the introductory section, the subsequent section comprises a comprehensive assessment of existing literature encompassing both theoretical and empirical research, which provide insights into the relationship between theory and practice. The third section provides an introduction to the background material pertaining to the research and technique employed in the study. Following the examination and results of the investigation, the writers proceed to engage in debates and explore the potential ramifications. In conclusion, this paper presents a summary of the main findings, offers recommendations for further action, suggests potential avenues for further research, and acknowledges the limits of the study. --- Literature Review Vulnerable groups at a glance South African roads impact certain groups more than others and consequently, these groups are at a higher risk than others. A child born in South Africa is more likely to be killed walking on the roads, with pedestrian crashes being the leading cause of injury and death for children under the age of 15 . Overall, young breadwinners, aged 20-34, are the leading victims of this road safety epidemic, whether they use the South African roads as pedestrians, passengers, drivers or cyclists . Males are four times more likely to be killed on the road than females . As road users, pedestrians constitute the majority of road deaths in South Africa, followed by passengers and drivers . Considering that pedestrians were considered vulnerable road users in the South African context. In the case of Cape Town, most of the pedestrian deaths have been found to occur in low-income areas , where a significant majority walk more than 10 minutes , to access their destination . This is observed to be the norm across African countries, with the most vulnerable found to come from low-income households that depend on walking as their primary mode of transport to access services and public transport . The risk of road fatalities varies depending on the province considered as well, meaning that residents of certain provinces are at a higher risk than others. This is found to be the case in Mpumalanga Province, where the road fatality rate is the highest at 37.9 fatalities per 100 000 population . --- Significant Contributing Factors to Road Fatalities The scope of this study focused on understanding factors that could lead to road fatalities in the area of the study. Contributory factors to road fatalities vary between rural and urban regions. For instance, in rural areas, stray animals on the road are seen to cause road fatalities, while in urban areas this kind of problem is minimal or non-existent entirely. However, in the specific case of South Africa, certain risk factors are found to be the leading cause of fatalities and injuries on the road. These factors in this literature review are grouped into four categories: i. Roadway geometry: number of lanes, work zones, alignment of the roadway, locality, etc; ii. Driver characteristics: age, gender, ethnicity of the driver, etc; iii. Driver and driving behavior: alcohol, distraction, secondary task, pre-incident maneuvers, speed choices, average miles travelled, etc; and iv. Vehicle characteristics: vehicle type, etc. --- Theoretical and Empirical Review Road Traffic Injury Theory This study looked into the bodies of theories related to road traffic injuries and fatalities. Emphasis was on system theory. The reason for using this theory is because it is relevant in the stating of the research title as well as the problem statement. The theory guided the researcher in choosing the research methodology. --- System Theory and Safety Concept The system theory approach can be traced and dated back to the 1930's and 1940's . It started as a response to tackling limitations in the availability of classical analysis techniques in traditional scientific approaches to explain social, socio-technical and biological phenomenon. An important aspect of the systems theory concept is the emergence and interaction of various independent parts. When they stop being independent and start to influence each other in correlation to their existing relationships and social engagement . It was further argued that relationships between the components of a system is a function of the nature of the components themselves that determine the properties and behaviour characteristics. This was in conformity with researchers who argues that road accidents occur when components of a system interact with each other and these interactions cannot be foreseen, because of their complexity . System theory is an integral part of safety as it relates to different complex socio-technical systems in the society. As concluded by Hollnagel, Braithwaite & Wears the road transport system is such a system and for that reason, system theory is applicable to it from a safety point of view. In the same vein, Salmon, et al., , stated that a system perspective-based model in the road transport domain could lead to a greater understanding of the latent conditions and road errors within the road transport system. This in turn could inform the development of strategies designed to promote error tolerance within the road transport domain. The environment as a system, comprises of natural components, the built environments and transportation networks, which should be studied as an integrated system. This is the same manner in which the behavioural components of humans comprise of demographic characteristics of road users: age, sex, education, socio-economic status, stage in the life cycle, people's perceptions of risk and people's general behaviour on the street are studied . --- The driver/human factor and environmental factors Driving a vehicle is a complex, cognitively challenging task requiring drivers to make safety critical decisions . In human factors terms, when driving in complex road environments, there is a constant and adaptive interaction between drivers and their environment . The term situation awareness is used to describe the complex interplay between the environment, human perception, memory/experience, cognition, individual goals and subsequent actions . In a study by Duke , the results demonstrated that risk estimates of percent accident involvement per percent of travel for drivers of large heavy vehicles continue to be overinvolved until the age of 27 years, when the risk generally decreased until the age of 63, after which increases were observed. Therefore older drivers display high accident involvement. In a study by de Winter and Dodou , violations increased with age, whereas for all other samples in the study, violations decreased with age. Errors, on the other hand, decreased stronger with age for the younger drivers than they did for the older drivers. Thus showing mistakes are easily made by the older driver. For efficiency and reduced effort, human minds categorise information into mental models or schema. Experience is a good teacher for one to always expect the unexpected. The same holds truth with the road usage. The fact that many of these incidents occur in daylight hours with good visibility meaning that there should be enough time for detecting, recognising and responding to the scene ahead, suggests that cognitive factors play a role . Regarding driver cognitive biases, research indicates, that when noticing the brake lights ahead, motorists reacted by slowing and changing lanes, not having noticed that there is a parked car in the other lane. Women have been reported to be more affected by this type of bias. This paper reveals that women are known to take fewer risks when driving they are over-represented in 'looked but failed to see' accidents and this could be explained by their higher tendency towards salience bias . --- Research Hypotheses Based on the theoretical background and framework, four hypotheses were formulated to highlight the various dimensions and relationships under investigation in this study. The following hypotheses directed this study: H0: There is no possible link between the occurrence of main human factors and road design elements. H1: There is a possible link between the occurrence of main human factors and road design elements. H0: There is no possible link between the vehicle type and road design elements. H1: There is a possible link between vehicle type and road design elements. --- Research and Methodology For this study, the research paradigm was rooted in positivism. Consequently, a quantitative approach was adopted following a crosssectional design was employed. The data-gathering instrument was a paper-based, self-administered structured questionnaire, which included a standardised measuring instrument using a five-point Likert scale. The first author distributed 260 questionnaires between the motorists and traffic officers in the Emfuleni Municipality. The responses from the respondents yielded 168 completed questionnaires from the Emfuleni Local Municipality inclusive of the motorists residing in the same municipality for a period of over 5 years. Respondents in the survey were asked to state their level of agreement with those given statements, as discussed below from strongly agree to strongly disagree. The data collected was analysed by coding and was computerised. Answers within the questionnaire were assigned numerical codes and entered Microsoft Excel. The codes from Excel were subsequently transported into the Statistical Programme for Social Sciences , [sa]; SPSS, [sa]) for coding and further analysis . The quality of the data was ensured through demonstrating validity and reliability. A structured questionnaire was used to survey the respondents. Ethical considerations are an important aspect of any research, especially research that deals with human participants. Hence, all research requires ethical clearance and approval to be conducted. For the purposes of this study, ethical clearance was granted by the university, initially on the condition that the Emfuleni Local Municipality Traffic Department approved the request to conduct research. This was later changed to full ethical clearance following the approval of the research request by the municipality. --- Findings and Discussions --- Demographic Characteristics of Respondents Female constituted of 93 respondents whereas male respondents represented by 75 . This can be attributed to the history of South Africa where females are in majority as compared with male population. Most of the respondents were aged 33-47, 55.42%, followed by ages youth 18-32 24.7%. Few respondents were over 55 years old, 1.6%. Twenty-nine respondents occupied the third spot representing eighteen percent . The elderly or those advanced in age-group , was the least represented in this study, with 4 . The distribution of the respondents by years of residence indicated that the majority 98 spent over 16 years in the area of study, followed by 50 who stayed between 5-15 years of residence. The least represented were 15 with less than five years. The distribution of respondents that motorists who resided in the area of study where in majority 91 , followed by traffic officials 62 , and the least with those respondents who indicated other 12 . These could be the taxi drivers who came to the taxi rank from other neighbouring towns. Regarding level of qualification, 98 respondents were in possession of a Matric Certificate, followed by 63 with post school qualifications. Four respondents did not indicate their level of qualification. --- Responses to Statements Cronbach's alpha is a measure used to assess the reliability, or internal consistency, of a set of scale or test items. In other words, the reliability of any given measurement refers to the extent to which it is a consistent measure of a concept, and Cronbach's Alpha is one way of measuring the strength of that consistency. A score below .70 suggests that the items within the tool may not be measuring the same underlying construct. For this study, the scores of above 0.90 for all the items forming the measuring instrument showed that these measurements were consistent measure of the concept of various factors contributing for road accidents in the Emfuleni Local Municipality . None of the Cronbach's Alpha was less than 0.70. The results are provided below. --- Findings --- Road environment factors An overwhelming majority of respondents agreed that factors responsible for road fatalities were due to slippery roads caused by weather conditions. Followed by who disagreed. Ten respondents were not sure. Regarding Road layout , the responses indicated that most respondents agreed to this statement whereas disagreed and were not sure. Regarding whether the fatalities were caused by deposit on road , agreed to the statement whereas disagreed and were not sure. The findings painted a bleak picture when it highlighted that an overwhelming majority of the respondents attributed fatalities to poor or defective road surfaces. Only a mere disagreed and were not sure. Another concern detected when the respondents highlighted that inadequate or invisible road markings are the second highest contributing factor to fatalities where agreed, whereas disagreed and only were not sure. Stray or wild animals were considered as the third contributing factor where agreed whereas disagreed and were not sure. Of all the statements, only statements "Stray or wild animals" under road environment factors and "lack of reflectors on back of the vehicle" under vehicle factors are statistically different between the male and female participants. Among the female participants, "Strongly Agree" i.e., 38.64% was the highest response while "Agree" i.e., 36.11% was the highest for the males. when asked if stray or wild animals were most responsible for road accident. Similarly, most female and male participants strongly agreed and agreed respectively that lack of reflectors on the back of a vehicle could be one of the vehicle factors responsible for road accidents . The variable with the strongest association to the underlying latent variable, Factor 1, is "slippery road", with a factor loading of 0.7722. This means that statement "slippery road" as depicted in Table 1 below, has a correlation of 0.7722 with Factor 1. Others are "Road layout" , "Deposit on road" and "Stray or wild animals" . Based on these statements loading highly on factor 1, this can be called "Problematic Roads from natural causes" Inadequate or invisible road markings , defective traffic signs and inadequate visibility have high factor loadings on Factor 2. They seem to indicate signage problem, so one may want to call Factor 2 "Signage problem". Poor or defective road surface and Traffic calming have high factor loadings on Factor 3. This may suggest the name "Problem Roads from government's negligence". Note: the word "Factor" is a term in factor analysis. It is not the same as "factors "in the questionnaire. --- Human factors Driving under influence of alcohol, medicinal or recreational drugs was considered as one of the leading factors under this category, where majority agreed whereas disagreed and were not sure. Inappropriate or excessive speed was also another leading factor where the majority agreed whereas disagreed and another were not sure. Disobedience of existing traffic regulations counted amongst the leading factors as well, where the majority of the respondents agreed whereas disagreed and were not sure. Having youths driving in the same vehicle also indicated high response where the majority agreed whereas disagreed and not sure. Poor eyesight of road users also ranked high as one of the leading factors that contribute to fatalities where the majority agreed whereas disagreed and not sure. Only two statements from each of road-environment factors and human factors were statistically significant when cross-tabulated with levels of education. However, of the 4 statements in vehicle factors, three were statistically significant with levels of education. The results are shown in Table 3. Options strongly disagree and disagree were merged to generate strongly disagree/disagree and strongly agree and agree were merged to generate strongly agree/agree because there were few numbers in some of the cells. Obstruction still ranked high where most of the respondents agreed whereas disagreed and not sure. Unskilled drivers was ranked high where most respondents agreed whereas disagreed and not sure. Finally, pedestrian who failed to look properly before crossing the road also ranked high where majority of the respondents agreed whereas disagreed and not sure. Variables as depicted in Table 3 below, shows the strongest correlation with factor 1 are "Insufficient attention to integration of road function with decisions about speed limits, road layout or design" , "Reckless or unsafe behaviour by road users" , Lack of tolerance by road users , "Use of handheld mobile telephones" , "Unskilled drivers " and "Pedestrian failed to look properly before crossing the road" . This may suggest the name "unlawful behaviour". "Having youths driving in the same vehicle" , "Poor eyesight of road users" , "Tiredness/illness" and "Obstruction " have the strongest correlation with factor 2. This suggests the name "Controllable circumstances". "Driving under influence of alcohol, medicinal or recreational drugs , "Inappropriate or excessive speed" , and "Disobedience of existing traffic regulations" are all strongly correlated with factor 3 and this suggests the name "Inefficiency of traffic officers". --- Vehicle factors Under this category, unroadworthy vehicles was considered as the highest leading factor contributing to road fatalities where majority of respondents agreed whereas disagreed and not sure. Second leading contributing factor was a mechanical fault of the vehicle where most of the respondents agreed whereas disagreed and not sure. Thirdly, most of the respondents indicated that illegal, defective or under inflated tyres was a leading contributing factor to road fatalities where agreed whereas disagreed and not sure. Lack of reflectors on back of the vehicle was considered as the least yet high contributing factor where many of the respondents agreed whereas disagreed and not sure. All these vehicle variables/statements are correlated with only one factor and the name vehicle factor is maintained. Even when a vehicle leaves the road owing to driver error or mechanical failure, the roadside design may still mitigate accident severity. This interaction between road, driver and vehicle characteristics complicates attempts to estimate the accident reduction potential of a particular safety improvement. The construction of a road is typically a trade-off between ideal roadway conditions and the economic use of scarce resources. Wide road reserves, high fills and deep cuttings, and long roadway structures to separate conflicting traffic streams are extremely expensive to expropriate and construct. The associated expropriation to acquire the necessary reserve width is also expensive. Road designs are often based on future demands for roadway capacity, which are evaluated mainly in terms of economic considerations, such as construction costs and the value of time. Safety should be a primary objective during all maintenance operations. Changes to the basic design should not be undertaken without consulting the designer and considering the effect on road safety. Frequent replacement of damaged road furniture should be reported, as it may indicate the need for redesign, which may eliminate the maintenance problem and improve safety. Enforcement should have as its basic objective the safety of the motoring public. Enforcing the regulations in accordance with the operational intent of the regulation is most important. Enforcement personnel can add greatly to safety improvements by identifying hazardous locations. By means of a good working relationship between the engineering and enforcement fraternity, many of these problem areas can be located and rectified before major accidents occur. The results on human factors contributing to RTAs have several implications. There are possibilities that at night and in bad weather conditions, the driver might not be aware of the changing situation and may end up on the wrong side, probably travelling in the opposite direction. Safety can often be improved without reconstruction, by widening lanes or shoulders, flattening side slopes, removing, or relocating roadside obstacles, and installing traffic control devices. The responses above were so disturbing. Amongst other factors pointed out by the respondents as leading to fatalities, reckless or negligent driving lead the pack and this includes actions like overtaking when it's unsafe to do so, not stopping properly at stop signs or traffic lights, and changing lanes into tight spaces. It's easy to see how these behaviours contribute to the high number of road accidents. It is the view of the researcher that motorists and other road users must perceive and process information, make decisions and react, all within specific time frames. Comfortable and safe driving and riding occurs when motorists are operating well below a stressful processing and decision-making rate, and above the minimum level of arousal . The driver should not be over-stimulated or lulled into boredom. This aspect is a critical component in the development and maintenance of a safe road environment. The safety, security, reliability, and quality of service of some modes are currently unacceptable. The findings of this study corroborated with a literature review. According to Road Safety Annual Report, South Africa 2019 as cited in International Transport Forum/OECD , behaviour of road users is an important determinant of a country's road safety performance. Human factors are the main causes of road crashes. In South Africa, jaywalking by pedestrians is reported to be major issue, with a contribution of 24% to the total number of fatalities for 2018. Speeding and inappropriate speed are also a major issue, as is "hit and run" . The government is committed to a concentrated and integrated effort to bring them into line with international best practice. Particular attention will be paid to road safety. The unacceptable traffic conditions on South African roads, and especially the high accident and casualty rates, must not continue. Road traffic safety is not a function, but rather the result of the efficient and harmonious operation of road and traffic related management systems, functions, and activities developed and implemented with the purpose of improving quality in road traffic. Based on the responses above, it is evident that a stronger approach will be needed to bring a more drastic improvement in road user discipline and reduce collisions. It is the view of the researcher that since taxpayers' money is used to provide for the planning, construction, and maintenance of public roads, it is incumbent on all spheres of government and road agencies to ensure the safety of road users. This may be achieved by means of road safety awareness programs, driver training, incident management systems, adequate road traffic signs and markings, visible law enforcement, safety assessments and audits, and designing for road safety. The responsibility for safety rests with many disciplines involved in administering, planning, designing, constructing, maintaining, and operating roads. The relative safety of a road depends largely on the priority attached to safety programs and projects. It is important that political and official sanction be given to implementing safety in all phases of road infrastructure provision. Safety begins and ends with decisions made during the planning process. For example, policies regarding intersection spacing and access to properties have a direct bearing on the safety of a particular road. Similarly, planners establish and control land use policies, thereby affecting the safety of the facility. Sight distance restrictions were also highlighted as one of the leading contributing factors as per the responses above, which might have resulted from obstructions on the inside of horizontal curves, at intersections, or at sharp hill crests. Although obstructions at horizontal curves can often be eliminated without changes to the geometry, obstructions at hill crests can only be corrected by changes in vertical alignment, which can by lengthening the existing vertical curve. Studies of matching sites with and without sight distance restrictions found that accident frequencies at sites with sight restrictions were 52% higher than the control group . The safety effect of a sight distance restriction is influenced not only by the restriction itself, but also by the nature of the hazards hidden from view. For example, a busy intersection hidden from view can greatly increase the frequency of accidents at crest curves. A queue of stopped vehicles can considerably shorten the available stopping distance. However, the object height of 150 mm assumed for crest curves, would not be applicable in this case, but rather the height of a passenger car, taken to be 1,30 m high, or at nighttime the height of car headlights, assumed to be 600 mm. The eye height of the driver will remain at 1,05 m . Another important factor to be considered, based on the responses and which has been commonly cited in the literature, is driving under the influence of alcohol is amongst other causes of road crashes in South Africa . Based on the 2018 figures, about 3.4% of fatal crashes occurred due to intoxicated drivers, pedestrians, and cyclists with liquor usage. In South Africa, the maximum authorised blood alcohol content is 0.5 g/l. There is a lower limit of 0.2 g/l for professional drivers of public transport and heavy goods vehicles. A crash is defined as alcoholrelated when one of the participants has a BAC above the legal limit . Data on the role of drug use by road users for road crashes in South Africa is unavailable. Driving while under the influence of intoxicating liquor or drugs having a narcotic effect, or with an excessive amount of alcohol in the blood or breath is prohibited. Drug driving measures are not yet enforced. An increasing problem for traffic safety in South Africa is distraction, for instance using mobile phones while driving . The National Road Traffic Act states that no person shall drive a vehicle on a public road holding a cellular or a mobile telephone or any other communication device in one or both hands and with any other part of the body. Seat belt wearing has been compulsory in South Africa since 2005 in front seats and rear seats for cars and minibuses registered after 1 January 2006. All new motor vehicles must be fitted with seat belts for all passengers. The driver is responsible for ensuring that infants are seated with appropriate child restraint. The seat belt wearing rate is very low, estimated in 2010 at 4.5% for the drivers and 5% for front seat passengers. There has not been any more recent survey on the use of seatbelts. The National Road Traffic Act, 1993 requires cyclists of all ages to wear helmets. This is compulsory for all cyclists. The regulation requires the use of protective helmet that is properly fastened and fitted while riding a bicycle or being carried as a passenger . The above responses regarding vehicle factor clearly painted a bleak picture regarding poorly maintained and un-roadworthy vehicles which contributed to accidents when parts, such as brakes or tyres, fail. An absence of mirrors, fractured windshields, defective lights and indicators, and no windscreen wipers all increase the likelihood of a collision. The rate of road traffic accidents in South Africa, is too high, and could be caused by negligence, illiteracy, unawareness and disorder, the old fleets of cars, taxis, heavy vehicles such as buses and freight trucks, lack of vehicle maintenance, and inadequate funds for proper road construction and maintenance . The findings also corroborate with the previous research that causes of road traffic accidents, to varying degrees, are to be found in defects in the vehicle, the driver and the road, or combinations of these defects . In most cases, accidents are the result of road users failing to obey the law. By studying accident statistics and patterns, designers can concentrate on hazardous locations with a view to safety-conscious design . Festive season is known as the bloodiest period on South Africa's roads. The disastrous combination of increased traffic volumes, drunk driving and unroadworthy vehicles manifests as carnage on the country's carriageways . To mitigate the wanton death and destruction during the festive season, the current road safety measures or strategies have managed to limit the fatalities on South Africa's roads. Still, based on the responses from the respondents, as well as the official figures remain shockingly high, a cause for serious concern among government officials and the public alike. To determine possible links and the hypotheses and the research objectives, the following was observed with Table 6: Objective H0: There is no possible link between the occurrence of main human factors and road design elements. --- H1: There is a possible link between the occurrence of main human factors and road design elements. Table 6 shows that all the p-values are less than 0.05, therefore this study rejects the H0. This means that there is possible association/link between human factors and road design elements. There is Spearman's correlation coefficient, measures the strength and direction of association between two ranked variables. Off all the factors, inefficiency of traffic officers and signage problem have the strongest association while the association between controllable circumstances and problematic roads from government's negligence is the lowest . The association i.e., the link is in a positive direction, for all the elements, the higher level of the human factors, the higher road design elements. --- Objective H0: There is no possible link between the vehicle type and road design elements. --- H1: There is a possible link between vehicle type and road design elements. Like objective 3, there was an association between vehicle factor and all the road design elements. Therefore, this study rejects the null hypothesis which says there is no possible link between the vehicle type and road design elements. The strengths of association are low and in a positive direction as depicted by Table 7 above. --- Conclusions The primary aim of this study was to ascertain the factors that contribute to the occurrence of road deaths within the Emfuleni Local Municipality. The results of this study underscored the impact of paved roads in mitigating traffic fatalities. Moreover, within the context of South Africa, numerous fatalities are attributed to a multitude of reasons, as elucidated by the findings of this study. Nevertheless, the findings of this study give rise to many policy consequences. There is a pressing need for policymakers in the field of traffic management, along with other pertinent stakeholders, to establish a shared understanding and agreement on the evident realities surrounding the significant number of fatalities occurring on roadways. This urgent situation necessitates a proactive response to revise existing strategies, which are widely recognized as ineffective, in order to address this critical issue. It is imperative to question and confront the prevailing state of affairs, as well as recognize that reforms are an inevitable outcome. There exists a necessity for a novel paradigm change. The prevailing paradigm, or the previous paradigm, has been implicated in the majority of vehicular accidents involving young individuals, older adults, drivers under the influence, and those who are preoccupied. The novel paradigm necessitates the assessment of crash rates per capita, the level of adolescent engagement in road safety programs, and the alteration of attitudes. The utilization of public transit as an alternate means of commuting to work, engaging in sporting activities, or visiting family members presents an opportunity for a significant decrease in deaths in South Africa. However, the acceptance and support of this mode of transportation by a broader range of road users is still lacking. The implementation of measures aimed at reducing vehicle travel has various advantages, such as enhanced safety, cost savings for consumers, higher affordability, alleviation of road and parking congestion, improved mobility for individuals who do not drive, and promotion of public fitness and health. Consequently, the adoption of this new paradigm necessitates a full examination of its overall impact. The emerging paradigm, meanwhile, will encounter multiple challenges, such as the inclination of numerous stakeholders towards safety initiatives that are specific in nature and their reluctance towards methods aimed at reducing car traffic. Nevertheless, the integration of new paradigm tactics into current programs has the potential to enhance their effectiveness, equity, and acceptability. This can be achieved by including enhanced mobility options that assist individuals at higher risk of accidents in reducing their reliance on driving. It is important to note that the proposition of eliminating motor travel for the purpose of ensuring safety is not being advocated. Nevertheless, according to survey data, a significant portion of individuals express a preference for reducing their reliance on driving and increasing their utilization of alternative modes of transportation, as long as these alternatives offer convenience, comfort, and affordability. The results of the study revealed that a majority of the participants expressed agreement with the inappropriateness of certain drivers and vehicles sharing the roads with others. This sentiment was attributed to different factors, which in turn contribute to the elevated occurrence of road traffic deaths. The present circumstance necessitates immediate attention. --- Data Availability Statement: The data presented in this study are available on request from the corresponding author. The data are not publicly available due to restrictions. Conflicts of Interest: The authors declare no conflict of interest. Funding: This research was funded by the Tshwane University of Technology, Transport Education and Training Authority.
The objective of this study is to examine and analyze the many factors that contribute to the occurrence of automobile deaths within the Emfuleni Local Municipality. This study employed a hybrid analytics approach, employing a non-probability convenience sampling strategy. The researchers employed a descriptive study methodology to gather a sample of 168 participants, consisting of both traffic cops and motorists. The primary outcomes of the investigation revealed that road configuration, including small roads, hills, and sharp curves, was one of several influential elements in the occurrence of road traffic accidents (RTA). The dataset under analysis reveals that a substantial proportion of respondents possessing a standard 10/matric/grade 12 certificate had a higher level of agreement compared to those with a diploma/bachelor's degree about the primary responsibility of road layout in road traffic accidents (RTAs). The majority of participants identified stray or wild animals as a significant contributing cause to road accidents. Notably, female respondents and motorists residing in Emfuleni Municipality exhibited the highest level of agreement on this matter. Another significant contributing element was the presence of malfunctioning traffic signals, which was widely acknowledged as a causative factor in road collisions. The majority of respondents who possessed a standard 10/matric/grade 12 education exhibited the highest level of agreement. The results ultimately demonstrated that a majority of the participants concurred that a significant portion of the drivers and automobiles present on the road were not suitable for sharing the roads with other drivers, leading to the elevated occurrence of road traffic fatalities. The present circumstance necessitates prompt attention. Suggestions were proposed to provide assistance to the pertinent parties.
Introduction In Nordic business and management practices today our 'espoused' and also our 'lived' cultural values are implicitly mirrored in both our societal and organizational operations. Consequently, they colour our everyday lives. A better understanding of the way business people from different Nordic regions communicate, manage, make decisions and manage risk is clearly essential in both inter-national and inter-regional enterprises. Even if the differences in each intercultural dimension are small, their combined effects may have severe consequences in specific situations. Consequently, this paper will 1) review the intercultural dimensions developed by project GLOBE to compare their findings of Danish, Swedish and Finnish research with the new Norwegian data in order to identify cultural differences in the Nordic region; and 2) review how practitioners might manage such intercultural differences. As a Nordic cluster we clearly share many cultural traits, yet -as the title of this article reminds us -we are not all Vikings as we have different historical roots and societal values. --- The Nordic Cluster: Contextual Setting The Nordic countries make up part of Northern Europe and the North Atlantic region which specifically consists of Denmark, Finland, Iceland, Norway and Sweden plus their associated territories. This paper will focus on GLOBE research findings from the respondents in Denmark, Finland, Norway and Sweden who represent 96% of the population in the Nordic cluster. Data has not yet been collected from the remaining 4% of the Nordic societies in Iceland, Greenland, the Faroe Islands and Åland; hence a discussion of these societies lies beyond the scope of this paper. All the Nordic regions' societies share much common history. As long ago as the 14:th century Denmark, Norway and Sweden were united under one Danish regent and remained so until Sweden re-established itself as a separate kingdom in the early 16:th century. Denmark's domination over Norway lasted even longer -until 1814 when Norway was ceded to Sweden. Norway's national independence was finalized in 1904. Finland's independence came even later, in 1917. Before this, Finland's history was marked by the dominance of another nation: in 1809 today's Finland became a Grand Duchy under the Russian Tsar before emerging in the midst of the Russian revolution as an independent nation in 1917. Finland never became an integrated part of Russia, yet 100 years of 'Russification' did not pass without leaving its mark. All Nordic societies also share a common linguistic heritage with their continental North German languages of Danish, Norwegian and Swedish . A further common cultural element in these regions is having the same indigenous people, the 'Sami', in all the northern areas. These people remain an important part of the cultural fabric of each Nordic society's past and present. In terms of other common traits of their respective contemporary societies, the Nordic countries also share similar political policies implemented during the post World War II period, especially in the socioeconomic area. All the Nordic countries have large tax-funded public welfare sectors and varying degrees of socialist legislation. Hence, with a combined population of approximately 25 million people and a nominal GDP of $1559.736 billion , the Nordic cluster is a significant trading partner in international business today. --- Methodology --- The Research Aim and Theoretical Perspectives The aim of the study has been to discover to what degree societal cultural practices differ in the Nordic cluster. To do this, an empirical approach was applied. This researcher recognizes the strengths of combining etic and emic approaches to cultural studies. In this way the statistical findings can be supplemented with rich data from focus group interviews and archival data. A mixed method approach with a predominantly quantitative element has therefore been used in this study for two key reasons. Firstly, in relation to the community of practice: a precedent in comparative societal cultural studies has been a positivist standing . A valuable philosophical insight offered to us by Stier 2010, however, reminds us that 'as with other evolving fields within the realms of science, the ontological assumptions and epistemological aspirations of intercultural communication studies are matters of debate and disagreement'. Thus, the second reason this researcher has combined the quantitative data with rich qualitative findings from focus group interviews and archival data has been to complement and annotate the statistical findings in response to such philosophical debates. Indeed, as Taras et al. conclude in their valuable meta-analysis of 121 instruments for quantifying, our ability to measure culture both quantitatively and qualitatively is critical to our progress in crosscultural studies . --- Project GLOBE The methodology and quantitative instrument applied in this present study are based on Project GLOBE's methodology. The theory that guides the GLOBE research programme is an integration of implicit leadership theory , value belief theory of culture , implicit motivation theory , and structural contingency theory of organizational form and effectiveness . This on-going research is a multiphase, multi-method project examining the interrelationships between societal culture, organizational culture and leadership. A total of 170 social scientists and management scholars from 62 cultures representing all major regions of the world are engaged in this long-term programmatic series of inter-cultural studies. GLOBE defines culture as shared motives, values, beliefs, identities and interpretations or meanings of significant events that result from common experiences of members of collectives and are transmitted across age generations . Clearly, when evaluating the GLOBE project's research in relation to Hofstede's seminal work, it can be seen that despite the use of different terms to identify cultural dimensions in the GLOBE project many of the cultural dimensions identified by House et al. are related conceptually and correlate empirically to Hofstede's dimensions . The GLOBE model, however, offers a set of nine cultural dimensions that is more comprehensive and rigorous than Hofstede's. These are linked to extensive theoretical underpinning in relation to key cultural studies carried out during the last 60 years . In addition, a valuable contribution now made to the field of intercultural studies by project GLOBE has been the inclusion of qualitative data from observations, focus group interviews and media analyses, correlated with their quantitative data. This can be seen as an important methodological contribution which responds to the critique given to the 'blind spots' of traditionally quantitative intercultural studies. Parsons 1949;Kluckhohn 1956;Hall 1960;Hofstede 1980;Trompenaars 1993;Smith and Bond 1993;Schwartz 1999;Triandis 1995;Gudykunst, et al. 1996;Trompenaars and Hampden-Turner 1998 --- GLOBE dimensions --- Definition --- Power Distance societal practices The degree to which members of a collective expect power to be distributed equally *A comparison of mean scores as above. Haire et al. 1966;McClelland 1962;Haire, Ghiselli and Porter 1966;Mulder 1977;Trompenaars,1993;Hofstede 1980;Schwartz 1994 --- Humane --- Orientation societal practices The degree to which a collective encourages and rewards individuals for being fair, altruistic, generous, caring and kind to others. *A comparison of mean scores as above. Kluckhohn and Strodtbeck 1961;Rokeach 1968;Schwartz 1994;Espen-Anderson et al. 1987;Trompenaars and Hampden-Turner 1998 --- Uncertainty --- Avoidance societal practices The extent to which a collective relies on social norms, rules, and procedures to alleviate unpredictability of future events. *A comparison of mean scores as above. Frenkel -Brunsvik 1949;Budner 1962;Hall 1959;Hofstede 1980;Inglehart et al. 1994;Triandis 1995; Ting-Toomey 1999 unidimensional and demonstrate significant and non-trivial within-culture response agreement between culture differences and respectable reliability of response consistency . Table 1 above summarizes the theoretical underpinnings of project GLOBE's cultural dimensions. This exemplifies the theoretical links between seminal research of culture during the last 60 years and GLOBE's cultural dimensions. A review is also offered of the statistical analyses applied in the quantitative element of this present study. No statistics have been published to confirm significant between-society differences. However, precedence has been set in published papers for cross-country comparisons without ANOVA tests . Future researchers should be given access to the raw country-level GLOBE and Hofstede data in order to test for significance of differences between cultures with ANOVA. --- Data Collection The sampling method generally applied in this survey is one type of systematic stratified sampling . The target population from which the sample is taken can be described as a sample that is representative of the complete group of elements and objects relevant to the research project . For the Norwegian survey, the target population was Norwegian individuals who manage privately-owned Norwegian companies. The sampling frame was representatives of the target population who are part of the Norwegian research organization Perduco's business research panel. Project GLOBE's sampling methods followed the same guidelines: managers who work and live in each respective country of the target population. Approximately 17,300 middle managers from 950 organizations took part in the original study of 62 societies by House et al. . A total of 710 middle managers took part in this researcher's study of Norwegian societal cultural practices for the Norwegian quantitative data. Ideally the sample is chosen so that no significant differences exist between the sample and the sample population's important characteristics. In other words, the sample serves as a model for the population. From a statistical analysis of the sample data it is then possible to generalize to the whole population with a specified degree of confidence. Strictly speaking, in this research we are studying the cultures of middle managers in each society. Thus, we must be cautious when making generalizations about cultures. Nevertheless, the core GLOBE societal practice and value orientations are strongly and significantly correlated with unobtrusive measures that reflect the broader society . The core GLOBE measures are also significantly correlated with independently collected indicators of societal values in the World Values Survey . We can therefore estimate that the GLOBE questionnaire responses reflect the broader culture in which the middle managers are embedded rather than the cultures of middle managers alone . The societal practices in this study were measured quantitatively by responses to the 39 self-report questionnaire items from section one of the GLOBE instrument. Secondary quantitative and qualitative data for the Danish, Finnish and Swedish societies were obtained from project GLOBE . The quantitative questionnaire items use a seven-step rating scale in the value surveys. For example, each dimension is conceptualized and depicted as a continuum between two extreme poles. Taking 'Assertiveness' as a dimension, '1' is greatly non-assertive, '4' is neither non-assertive nor assertive and '7' is greatly assertive. Cross-cultural literature indicates that a systematic bias may occur if respondents complete a survey that is not written in their native language .Thus, the items written in Norwegian/Swedish/Danish and Finnish were applied in this study, using back-to-back translation protocol. As noted above, the means for the nine cultural practices scores for all 17,300 respondents range from 3.37 to 5.17 , on the seven-point scale. A total of 37 Norwegian managers took part in focus group interviews for the qualitative element of the study in 2010. Secondary qualitative data for this study were also gathered from previous studies of Swedish, Danish and Finnish culture .The following section now summarizes the GLOBE cultural dimensions and findings for performance orientation, collectivism, assertiveness, humane orientation, power distance, gender egalitarianism, uncertainty avoidance and future orientation within a Nordic framework. 1. Performance Orientation within a Nordic setting refers to the extent to which an organization or society encourages and rewards group members for performance improvement and excellence . Norway's mean score: 4.18, seen within the context of the GLOBE survey of 62 countries, shows a moderate level of performance orientation for Norway as a whole. In terms of Sweden's lower mean score in performance orientation , Holmberg and Åkerblom review this score in the light of the political policies implemented in Sweden. They note that Sweden's development as a welfare state was to a large extent due to its middle-of-the road strategy between capitalism and socialism, a strategy accomplished in a joint effort by a triad consisting of the state, the labour unions and employers . Such balance between capitalism and socialism has impacted this performance orientation. Norway's and Denmark's development as welfare states correlates closely to that of their neighbour Sweden in also following a path between capitalism and socialism where the edges of performance orientation are also somewhat softened by collectivist values. In Finland the current level of performance orientation is the lowest in the Nordic cluster. Lindell and Sigfrids posit that an explanation for this is that although business results are stressed in Finland, there are many counteracting factors, especially at society level. There is a desire to even out differences in earnings through a re-distributive taxation system, and the social security system is constructive and guarantees a minimum standard of living for everyone. A seminal text on the 'Jante Law' published by the Danish/Norwegian author Aksel Sandemose in 1933 promotes modesty as an important cultural value in the Nordic region , i.e. don't believe that you are better than anyone else. Consequently, traditional values in the population today still clearly mirror Sandemose's cultural construct of egalitarian, modest behaviour where no-one should try to show themselves as being better than anyone else. This stands in strong opposition to performance-focused values. Nevertheless, during the last decade initiatives have been made to move away from the 'Jante Law' as many Norwegian, Swedish and Danish companies have introduced performance appraisal measures and reward initiatives. However, what counts in career development in the Nordic region is still competence in the performance of duties rather than self-promotion of one's self. To conclude, performance orientation mean scores in the Nordic region are highest in Denmark at 4.22, followed by Norway: 4.18, Finland: 3.81, Sweden: 3.72. --- Gender Egalitarianism within a Nordic framework is the extent to which a society minimizes gender role differences. With a high mean score , Norway can be described as the Nordic society that attributes most equal status to men and women. Since Norway's first female Prime Minister Gro Harlem Brundtland was in office, Norway has worked actively towards gender equality in both the public and private sectors. In 1986, Brundtland's Cabinet was made up of 44% females and 56% males . In 2005, after the general elections, 64 out of the 169 seats in Parliament were won by females, ranking Norway as fifth in the world in terms of the percentage of women MPs . In the workplace in Norway today, according to recent surveys carried out by Statistics Norway , 75% of all women aged between 25-66 are at work . Altogether 72% of women with children under the age of three are at work, and 82% of women with children between the ages of three and six are at work . Pre-requisites for the success of the equal opportunities situation in the Norwegian, Swedish and Danish workplace have been 1) government subsidized pre-school day care centres, 2) shared maternity/paternity leave, with parents choosing to share up to one year's paid leave, and 3) flexible working hours: a typical working day in the Nordic region is from 8.00am to 4.00pm, with the opportunity to use flexitime, some home office hours and paid time off when children are sick . Mean scores for all 62 societies was 3.37. Within the Nordic region, however, gender egalitarian mean scores were much higher and highest for Norway: 4.03, followed by Denmark: 3.93, Sweden: 3.84, Finland: 3.35. 3. Assertiveness refers to the degree to which individuals in a society are assertive, confrontational and aggressive in their relationships with others . The mean scores in all Nordic region countries are low and are lowest in Norway: 3.37. Indeed foreigners often regard Nordic societies as somewhat reserved and 'coldhearted' due to the fact that many Nordic people are non-dominant and do not reveal their emotions openly. This way of showing feelings is very culture-specific. A Norwegian person's insular approach does not mean that individuals do not feel emotions: it is an indication of the sense of order and of keeping control in an interdependent society such as Norway. In the Nordic region it is rare to have a heated argument or strong disagreement at work or in private life. In traffic it is unusual to blow your horn or to push into a queue. A sense of order and fairness is prevalent from the time one starts in nursery schools and learns to take turns to the custom of patiently waiting in line in the company canteen. Country mean scores for Norway and her Nordic partners are as follows with Finland showing slightly higher scores: 3.81, followed by Denmark: 3.80, Sweden: 3.38, Norway: 3.37. The mean scores for Assertiveness in all 62 societies is 4.14. All Nordic countries thus fall into the lowest band of countries in terms of assertiveness in their social relationships. --- Institutional Collectivism: elements of collectivism on a societal level in Norway, Sweden, Finland and Denmark, impact conformity and interdependence among groups of individuals. The strong support for the labour unions is a good indicator of this dimension as their political influence and high level of membership represent the ethos of supportive collective interests in a society. For example, almost nine out of every ten wage-earners in Norway are members of a union. Some comparable figures are one out of three in the UK and one out of four in Japan . Institutional collectivism is also seen in the high tax levels in all Nordic countries. The public sector has consequently assumed extensive responsibility for many services such as education, the labour market, care of the sick and elderly, pensions, social insurance and pre-school child care. Thus the high level of tax supports institutional collectivist goals. To conclude, mean country scores for institutional collectivism show rather high levels for most Nordic nations compared to the Globe mean scores: Sweden: 5.22, Denmark: 4.80, Finland: 4.63, Norway: 4.07 . Scores for Group Collectivism indicate the degree to which individuals express pride, loyalty and cohesiveness in their families and community/organizations. Pride is an important element of the Nordic culture -national pride and also pride in the achievements of the local community and the achievements of children. Children in many areas of the Nordic region are encouraged to take part in numerous after-school activities such as sports, theatre clubs, music schools and bands, and water sports. Parents are strongly encouraged to voluntarily take part in the organization and running of many such clubs. Pride in the children's participation in such a wide range of activities can be seen as an extension of national pride. Even though Norway, Sweden, Denmark and Finland have collective school systems based on the philosophy of one state-run school system for everyone, the sense of pride in extra-curricular activities, the sense of responsibility and inclusion in local communities is a Nordic trait. A specific anomaly in the Nordic region's group collective culture, however, lies in the Norwegian tradition of expecting the state to take care of old people and the sick rather than expecting the family to take this collective responsibility. A culture which scores high on in-group collectivism is traditionally a culture which values a home where many generations live together and where the family collectively assume responsibility for the elderly or infirm within the home and where young people at work and university traditionally stay at home until they start their own family. In the Nordic region, the high taxation system supports a comprehensive welfare state which in turn provides state care for the elderly or sick -thus the collective responsibility is not to provide a home for all generations but to contribute to the welfare state via paying one's taxes. It is not therefore the norm to take care of elderly parents personally. The state provides a certain financial support in the form of grants or state loans for young people wishing to take further education. This provides opportunities for young people from all backgrounds to study. Furthermore, the state pension scheme lessens the financial responsibility of taking care of the elderly, and the social security payment system alleviates the burden that many cultures carry for caring for those unable to work. To sum up, the mean group collectivism scores for the Nordic cluster are as follows: Norway: 5.34, Finland: 4.07, Sweden: 3.66, Denmark: 3.53. --- Power Distance is defined as the degree to which members of an organization or society expect and agree that power is unequally shared . Norway's mean score of 4.13 in the power distance dimension depicts Norway as a low power distance society, in keeping with her Nordic cluster profile. Such low power distance values in the Nordic region are manifested in certain aspects of business practices such as little use of formal titles, dress codes and practical attitudes to tasks in the workplace. Most organizations do not adhere to strict dress codes in order to show status. Even in institutions such as parliamentary offices and legal institutions, a senior member may be dressed as informally as a junior staff member. Titles or last names are rarely used when addressing others, even if they are of senior rank. Another element of power distance -the roles and hierarchy within a society -is mirrored in the egalitarian practices at work in the Nordic region, especially in Denmark, Sweden and Norway: in company canteens, for example, all staff, whether directors or junior staff, pick up their food themselves in the staff canteen in an orderly manner and dispose of uneaten food and used plates themselves in the kitchen return area. Canteens are almost never segregated on the basis of position in the Nordic countries. As societies that expect and agree that power should be equally shared, the Norwegian, Danish and Swedish progressive and comprehensive tax systems, the high union membership and the generous welfare states exemplify systems that are in place to protect and promote egalitarian values. Holmberg and Åkerblom discuss elements of low power distance seen outside the workplace in Sweden. Burial grounds for instance, are generally similar for everyone, regardless of family wealth or social status in Denmark, Sweden and Norway. Nor is the ability to gain priority over others to get on a bus or any other public transportation helped by personal status in Norway, Sweden, Finland or Denmark: everybody is obliged to queue. Also significant in this context is the absence of pictures of living political leaders in any public place or on symbolic artefacts such as stamps . In general, if a street name acknowledges an individual in Norway, Sweden or Denmark, it is most likely to be of historical origin . Thus, egalitarian values are promoted on a national and company level. To sum up, the mean scores in power distance for the Nordic countries are lowest in the whole 62-nation study. Indeed, the mean scores for project GLOBE was 5.17, compared to Denmark: 3.89, followed by Norway: 4.13, Sweden: 4.85, with Finland showing the most hierarchical tendencies with 4.89. Hence these results support the findings from Lindell and Arvonen that a dominant feature of the Scandinavian management style in general is delegation of responsibility. 6. Humane Orientation is the degree to which an organization or society encourages and rewards individuals for being fair, altruistic, friendly, generous, caring and kind to others . The social concern that is characteristic of Norway, Sweden and Denmark is captured in part by this dimension, where Norway scores rather high . The Nordic region is known for generously supporting aid work and refugee programmes, and also for working as brokers in peace negotiation initiatives. Such initiatives may be seen to indicate a sense of humane orientation towards others. At an institutional level, the welfare state discussed earlier in this paper quantifies the fairness and care that can be expected in the Norwegian, Swedish, Finnish and Danish societies. At a regional level, historically, as predominately agricultural and fishing nations, local communities living in harsh climates have traditionally helped each other in times of need. Even today, the philosophy of 'civic duty' and taking part in a 'dugnad' remains a part of daily life in many regions in the Nordic region, but to a lesser extent in large cities. To conclude, the scores in humane orientation for the Nordic countries are highest for Norway: 4.81, followed by Denmark: 4.44, Sweden: 4.10, Finland: 3.96. --- Uncertainty Avoidance is defined as the extent to which a collective group strives to avoid uncertainty by relying on social norms, structural arrangements, rituals and bureaucratic practices to alleviate the unpredictability of future events . The mean scores for Norway: 4.31, Finland: 5.02, Denmark: 5.22, Sweden: 5.32, indicate a moderate collective value of striving for order in society in the Nordic region, with the 62-nation average scores being lower at 4.16. Examples of uncertainty reduction and protection measures in the Nordic cluster include the high value placed on the extensive welfare system with comprehensive social security payments for sick leave, long-term disability, unemployment, maternity and paternity pay. A second Norwegian, Swedish and Danish institution which mirrors the value placed on uncertainty avoidance is the ombudsman system -a system of checks and balances that protects individuals against misgovernment in the legal or public administration systems. Another element of Norwegian, Danish, Finnish and Swedish cultures that is reflected in the sense of order in society is people's approach to time. The social norm is to always be 'on time' for both business meetings and social gatherings. Agendas are frequently distributed in business meetings and social club meetings, and even for birthdays, weddings and christenings, to ensure a sense of order. In this way, good time keeping and the ethos of sticking to agreed times is important in the maintenance of good social relations, in both working and private life. 8. Future Orientation is the degree to which an organization or society encourages and rewards future-oriented behaviours such as planning, investing in the future and delaying gratification . All Nordic countries rank moderately high in terms of future orientation This result mirrors a culture where saving for the future and long-term planning at an institutional level is valued. On an individual level, the majority of Scandinavians have some private or company pension funds to save for financial security in the future. At an institutional level, the welfare system and mandatory occupational pension schemes provide guaranteed pensions or disability payments to cover the future financial needs of the population. The government's strong commitment to free schooling from the age of six to eighteen and free university places also mirrors the Nordic regions' ethos of planning for a better future. To conclude, the country scores for Future Orientation are marginally higher for Norway: 4.48, followed by Denmark: 4.44, Sweden: 4.28 and Finland: 4.24. --- Summary of Findings To summarize, although the Norwegian, Swedish, Danish and Finnish cultures are indeed ostensibly similar, the results of this present study illustrate Ashkansy's point that such intercultural research can reveal subtle but important cultural differences in nations that are similar yet dissimilar. All four Nordic societies appear intrinsically egalitarian, they appear to value low power distance, directness and consensus in decision making and to promote gender egalitarianism. Box-plot statistics are used in Table 3 below to show the distributions of cultural practices scores for all 61 GLOBE countries . In the cylinder-shaped box-plots, the four quartiles represent the lowest 25%, low 25%, high 25% and highest 25% of all scores from 17 300 respondents. The vertical black bar represents the median. Denmark's scores are represented by a circle, Norway's scores are represented by a square, Sweden's scores are represented by a slash and Finland's scores are represented by an X. In this way, the variation between the mean scores for the Nordic countries, as a cluster, compared to the mean scores for all GLOBE dimensions is clear to see. Moreover, one can see significant differences in the national mean scores of each individual Nordic society, indicating the uniqueness of each Nordic nation: Table 3. Quantitative findings from the study of Nordic countries with Project GLOBE dimensions adapted from brodbeck et al. 2002;Warner-Søderholm, 2010 * In terms of sample sizes, these are 710 respondents for the Norwegian dataset. Sample sizes not specified for all countries by House et al. . It is stated that a total of 17,370 respondents completed the questionnaire and that the number of respondents by society ranged from 27 to 1,790 with an average of 251 respondents per society. A valid critique of quantitative findings in cross-cultural studies has been: how meaningful can we say a mean difference of .10 for example is? There is no tradition for ANOVA analyses to calculate significant differences in comparative cultural studies with GLOBE or Hofstede data. Hence the collection of qualitative data from focus group interviews and archival data in this study addresses the need for a richer understanding of the quantitative findings to add meaning to the statistical results. These unique country variances in cultural practices can then to be understood and appreciated to avoid misunderstandings in diverse Nordic teams. --- Managing Nordic differences The qualitative statements listed below, collected by this researcher from focus group interviews and archival data, capture particularly important and unique aspects of each individual Nordic culture which individuals need to manage in business or education. Practitioners working with colleagues from Norway, for example, may need to deal with a more direct culture where honesty is traditionally valued above face and harmony. On the other hand, colleagues visiting Sweden may need to respect the general appreciation of a more pragmatic matter-of-fact approach to tasks and a clear borderline between private and public life. Visitors to Denmark may experience a more individualistic, autonomous approach to tasks, whereas in Finland one may expect a more defined sense of responsibility, clear lines of authority and less social networking. Smith et al. 2001;Grennes 2003;Javidan et al. 2004;Warner-Søderholm 2010, Warner-Søderholm 2011) Clearly, management practices in Norway differ in three subtle ways from those of her Nordic counterparts since Norwegians tend to place greater value on low context communication, stronger gender egalitarianism values and a low power distance. This is in clear contrast to the more silent, conservative Finnish approach. Management practices in Sweden tend to differ in three different ways: Swedes tend to value collectivism within the framework of socially concerned individualism -in other words as people who value personal achievement and rights whilst at the same time supporting initiatives such as the welfare state. Moreover, part of the Swedish decision-making culture is a participative approach with consensus valued above a top-down style of management. In addition, Swedes tend to value a clear borderline between private life and working life. They may not be used to sharing much spare time with work associates. Danish management practices are often coloured by an intrinsic sense of open, participative management, where a close sense of supervision is not appreciated. Consequently, high reliance on colleagues and co-workers rather than a reliance on top-down instructions is the norm in Denmark. Finns report a strong aversion to rules made by others and a strong respect for 'unwritten rules' . Another rather unique element of the Finnish culture in a Nordic context is their more masculine business culture, with fewer females in decisionmaking positions than their Nordic neighbours. --- Statements used to describe unique Norwegian cultural values While these intercultural differences in societal values are not major, their combined effects may have consequences in certain situations. For example, if a manager from Norway presented his or her ideas in an open, direct manner, this could be interpreted as confrontational by the other party. A statement could be made by a Swedish manager such as "I'm afraid we believe that the company should consider due diligence procedures". The manager from Norway might have phrased this message as "You have to follow due diligence procedures!" In a similar way, the communication style of a project member from Finland might mirror his or her slightly more assertive, hierarchical values. A colleague from Sweden may misunderstand such assertive leadership behaviour as rather too autocraticthey may value a more trusting and consensus-based approach to business instead. Knowledge about such specific cultural characteristics can help team members from different Nordic regions to value and anticipate differences. Potential problems such as interpersonal conflict, which leads to stress and unnecessary personal strain and potential loss of revenues, can then be minimized. --- Conclusions The purpose of this paper is twofold. Its first purpose has been to explore Nordic intercultural communication practices based on project GLOBE's qualitative and quantitative findings combined with this author's new research findings of the Norwegian culture . The second purpose of the paper has been to shed light upon unique values and practices within this region to help future practitioners work more effectively in the Nordic region. As discussed earlier in this paper, 'we're not all Vikings' even though we share a rich cultural history and traditions. Subtle but disturbing differences may surface even when representatives from neighbouring regions in the Nordic cluster work together. --- Author's Address
The concept of 'Scandinavian culture' is not new: the implicit understanding is that all Nordic states have similar cultural values (Smith et al. 2003). Nevertheless, disturbing cultural differences may still surface even when representatives from similar cultures work together. The purpose of this paper is therefore to understand the intercultural landscape of the Nordic region today and to appreciate the unique cultural values of each nation. The hallmark of Norwegian cultural practices within a Nordic context is seen to be higher gender egalitarianism. The most pronounced Danish cultural trait within a Nordic framework is low power distance. The Finnish culture on the other hand is seen to be the most hierarchical and formal culture in the Nordic region, whereas the Swedish culture is said to mirror values such as 'socially concerned individualism'. Indeed, a subtle equilibrium seems to pervade the Swedish way of behaving -a balance between individualism and social concern.
Introduction --- The Inequitable Distribution of Public Goods in New York City Even though inequality is a global problem, it cannot be understood as such. As with other social problems, it is necessary to look more closely at the more and less contexts in which it takes place such as Brooklyn, New York. «Global citizens» exist merely as theoretical terms in contrast to the flesh and blood people for whom the term refers. Because of conflicts and competitions over the centuries among and between groups who have come to Brooklyn, there has been an unequal distribution of both public and private goods. "Public goods" are commodities or services provided by government that generally have been paid for through public taxation. They are offered for the benefit all members of that society, and many are often provided for free . Examples of public goods include law enforcement, national defense, public safety, access to clean air and drinking water, and services such as recreation, education, and health. Governments at all levels in the United States -Federal, State, and Municipal-provide a wide variety of such public goods. Brooklynites have been lucky in that both New York State and New York City, having a more progressive political tradition, have offered its residents more in the way of public goods than most other states. Although we believe that everyone has an equal right to the city, it is clear that there continues to be a need today for a comprehensive urban policy that is balanced and equitable. For example, a citywide critical evaluation of the Bloomberg mayoral administration was taken by political sociologist John Mollenkopf and Councilman from Brooklyn Brad Lander . The study showed that the Mayor had little concern for the broad increase in inequality, "… seeing it as the inevitable consequence of the prosperity of the city's top earners, who pay a disproportionate share of local taxes." Despite some success in stimulating economic growth, incomes for the poorest workers rose only slightly . They also noted that Bloomberg's centralized, data-driven, approach to governance largely ignored opinions of local residents and activists. "Purported economic benefits were used to justify many land use and economic development decisions , policing, and education " . It should be noted that, Bloomberg's Mayoral successor, Bill DeBlasio, used the notion of the "Tale of Two Cities" as his campaign platform to criticize the former administration's innovations which focused on homogenizing the city away from diverse races, ethnicities, and social classes . However, despite the well-meaning slogan, the unequal distribution of public goods continued, and in some cases were exacerbated by the Covid 19 pandemic. What follows is a discussion of some of the many ways by which inequities are demonstrated in Brooklyn with a special focus on Black Brooklynites who until the present day have been the least recognized and/or compensated for their contribution. Over the centuries, among migrant groups, Blacks consistently have gained the least and lost the most. They have been in Brooklyn the longest and, cumulatively, have made the greatest contributions to the prosperity of the borough. If we were to ask what it is that is owed them for their contributions, the answer would be a great deal. Why, then have they not received their fair share. --- Methods. Distributive Social justice This article conducts a thorough literature review and utilizes methods involving the analysis of changes in population numbers, encompassing both overall figures and those specific to various racial groups, throughout the 1990s and 2000s. Additionally, the study incorporates observation and field studies conducted in New York neighborhoods spanning five decades and selective review of five centuries of Brooklyn history. The overarching objective is to comprehend the correlation between race, poverty, and gentrification by employing this multifaceted, population-focused approach. Some view inequality as "natural" and therefore are not stimulated to act. Others reject them as inevitable consequences, are moved to act. As do many other scholar activists and urban social scientists today, I believe these essentially Neoliberal and classic urban ecological responses can be contested as issues of social justice. For me questions such as "Who has a right to the city?", "What is urban justice?", and "What is a just city?" require an affirmative response. Although a full discussion of this issue is beyond the scope of this chapter, a few comments in reference to the distributive social justice principles of John Rawls and especially those in regard to urban territory of David Harvey are a necessary foundation for the readers' understanding of this point of view. For a society to be called "just" it must guarantee its members equal access to the liberties, rights, and opportunities it can offer and simultaneously to care for the least advantaged. This depends however on the acceptance of the idea of a social contract freely entered into by its members to which Rawls believed free rational people would ascribe. The principles of justice in the contract «specify the basic rights and duties to be assigned by the main political and social institutions, and they regulate the division of benefits arising from social cooperation and allot the burdens necessary to sustain it» . Harvey refers to Rawls in his discussion of eight principles of territorial distributive justice to address the uneven distribution of urban resources and rights. From these he chose three in the following order -need, contribution to the common good, and merit -that "are sufficiently comprehensive to subsume many of the issues which could legitimately be raised under the other headings" . However, he cautions that the concept of territorial distributive justice is not all-inclusive but a principle for resolving conflicting claims -"a just distribution, justly arrived at" . Most germane is Harvey's most important principle of "Need -Individuals have rights to equal levels of benefit which means that there is an unequal allocation according to need" . In this work we have clearly shown that poor and working-class residents in general and Nonwhites of virtually every income level in Brooklyn have been unfairly treated by public and private agencies as to their right to remain in their homes and neighborhoods. This is especially unfair given that in many cases it was their individual and collective efforts that were responsible for the survival of these places during the crises that threatened the health of the entire city. Furthermore, as to the "Right to the City," Lars Frers and Lars Meier , argue that the word "right" has many meanings which must be adjusted as local and historical contexts, and must pay attention to the right to practice diversity within it. With specific reference to immigrants, Marcello Balbo sees the right to the city as "a series of legitimate claims to the necessary conditions of a satisfying, dignified and secure existence in cities by both individual citizens and social groups" or "the right of all citizens to access the benefits the city has to offer, based on the principles of solidarity, freedom, equity, dignity and social justice" . Although they are somewhat utopian, the United Nations 17 Sustainable Development Goals are viewed by many as a blueprint to follow for building a better and more sustainable future for everyone. In brief, among the most relevant goals for this chapter are calls to end Poverty and Reduced Inequalities. The guiding principle for all 17 Goals is "Leaving no one behind." From the Introduction to the Declaration of the Transforming our world: the 2030 Agenda for Sustainable Development: As we embark on this great collective journey, we pledge that no one will be left behind. Recognizing that the dignity of the human person is fundamental, we wish to see the Goals and targets met for all nations and peoples and for all segments of society. And we will endeavour to reach the furthest behind first. It is easy to see how these principles might apply to second and third world countries, but what about the USA, and especially Brooklyn, where, unfortunately, it is also clear that the benefits of Sustainable Development are not equally shared among all segments of society. Although all cannot be discussed here, the most relevant for this chapter, are the Ten Targets for Sustainable Development Goal 11, building "Sustainable Cities and Communities," such as ensuring access for all to adequate, safe and affordable housing and basic services and enhancing inclusive and sustainable urbanization and capacity for participatory, integrated and sustainable human settlement planning and management. Of equal importance is Goal 16's promotion of peaceful and inclusive societies and providing access to justice for all to build effective, accountable, and inclusive institutions at all levels . --- Brooklyn: 500 Years of Growth and Change The first human Brooklynites were Native Americans who called themselves the Lenape, which means «the People.» The Lenape included the Nayack and the Canarsee tribes who planted corn and tobacco and fished in nearby waters. Brooklyn was the seasonal home of the Canarsie, but their lands and wealth were expropriated by fraud and violence during Dutch and then British colonization. The Dutch first settled in Manhattan in the early 1600s, and began to buy land across the river in Brooklyn 1636. By the 1680s the native people had lost all claims to the rolling, heavily forested landscape. The Dutch founded five villages: Bushwick, Brooklyn, Flatbush, Flatlands, and New Utrecht. Gravesend, a sixth village, was founded in 1643 by Lady Deborah Moody, an Englishwoman who was fleeing religious persecution in England and the Massachusetts Bay Colony. The British captured the Dutch territory in 1674, and gathered the six villages into Kings County, part of the crown colony of New York. A census taken in 1698 counted 2,017 people in Kings County. About half of these early settlers were Dutch. The others came from Germany, England, France, and Scandinavia, and included a large number of black slaves brought from Africa. Slavery flourished in these rich farmlands during the 18th century. Since initial invasions of Europeans in the 16th and 17th Centuries, there has been a trickle, that became a torrent in the 19th and 20th Centuries, of migrants and immigrants from every corner of the nation and the globe. Of especial importance for the making of modern Brooklyn, are African Americans, most of whom first came to Dutch New Amsterdam and British New York as slaves five-hundred years ago. It must be noted that African slavery increased and became harsher under British rule. Although New York State passed a Gradual Emancipation act in 1799 that freed those born after July 4, 1799, but they continued to be indentured until they were young adults. In 1817 a new law passed that freed slaves born before 1799, but not until July 4, 1827 . Just before the Revolutionary War, slaves composed nearly one third of the population of Kings County. Even before legal slavery ended in New York, a small number of free Blacks had settled in Brooklyn, and over time their settlements, such as Weeksville, grew and, within the limitations of racial discrimination, even prospered. Schools, associations and businesses were established within the confines of their own small, racially segregated, communities. They also contributed greatly to anti-slavery movements and the Underground Railroad. The increasingly dense urbanization of Brooklyn began in the northern and western areas that were closest to Manhattan, and moved mostly in southern and easterly directions. This was the major pattern for the growth, decline, and current rejuvenation of the borough, and in almost every period Black Brooklynites gained the least and lost the most. As New York City flourished, so did Brooklyn as commuters, immigrants, and commerce traveled across the river from Manhattan. Development first took place along the waterfront and gradually spread toward the interior. At the turn of the 19th century, the first large-scale immigration begin with Irish immigrants and when the Erie Canal was finished and connected to Brooklyn in 1825, the local economy exploded. By 1860, the City of Brooklyn, with more than 200,00 residents, was America's third-largest city and expanded rapidly southward toward semi-rural areas as Irish and German immigrants poured in. When the Brooklyn Bridge opened in 1883 it brought more people into Brooklyn from Manhattan. By 1880, Brooklyn had become a major national manufacturing center in need of workers. Work, though not always safe or healthy, was widely available in booming maritime businesses, gas refineries, metal works, and all sorts of sweatshops. Later in the decade, came a huge wave of immigrants from Eastern Europe, including Russian Jews, Italians, and Poles, along with a mixture of Scandinavians. The City of Brooklyn annexed the originally independent five towns, and itself was annexed by New York City in 1898. At the turn of the 20th century, Brooklyn's population was 1,166,582, almost a third of which were foreign-born. In 1900, the Black population of 18,367 remained in a small number of settlements in Central Brooklyn. The early years of the 20th century saw a vast expansion in the population from 1,634,351 in 1910 to 2,018,356 in 1920. During the same period Brooklyn's Black population grew from 22,708 to 31,912 as the urbanization of Brooklyn intensified with new bridges, trolley lines, elevated railroads, and subway lines drawing people and commerce away from the shorelines. By 1930 Brooklyn's population exploded by almost a million souls to 2,560,40, and as part of the «Great Migration,» of Blacks from southern states, the borough's Black population more than doubled to 68,921. And for the first time, more than half were not Brooklyn-born. However, Black's residential confinement to Central Brooklyn continued as they became the majority in downtown Brooklyn, Fort Greene, Clinton Hill, Prospect Heights, Bedford Stuyvesant, and Crown Heights . The growth of the borough continued more slowly into 1940 and 1950 with 2,698,285 and 2,738,175 respectively. During the same time, the Black population almost doubled again from 107,263 to 208,478. Unfortunately for them, after World War 2 ended, Brooklyn's economic engines that fostered upward mobility for legions of prior im/migrants stalled. For example, factories move to cheaper, non-union locations and the busy ports became less so as huge container ships off-loaded across New York Harbor in modern New Jersey ports. A major Brooklyn economic icon, the Brooklyn Navy Yard, was shuttered in 1966. Each historical period resulted in differential gains and losses for newcomers, as well as old-timers, in New York City. As we will read in what follows, the period from 1950 to 1970 was the most crucial for Black Brooklynites. All poor and working-class im/migrants suffered discrimination in housing, employment, as well as electoral politics. Many were forced to live in unhealthy neighborhoods, work in underpaid jobs and in unsafe working conditions. Most were also denied patronage opportunities in public employment. For the Negroes, Puerto Ricans, Jews, Italians, and Irish of New York City, much of this was detailed in Daniel Patrick Moynihan highly influential, and widely criticized, Beyond the Melting Pot. Despite his misplaced optimism that Blacks would achieve, as did the others, in only another decade or two, it was still a good chronicle of wide-spread discrimination. As others, such as Elijah Anderson , would later argue, racism was a much more difficult bias than religion and ethnicity to overcome. From 1950 to 1980 Brooklyn's total population decreased, primarily due to working and Middle-class White flight. The easy availability of government-sponsored housing loans for new construction outside of the central city, and the building of highways to the suburbs helped hundreds of thousands of white middle-class residents to flee deteriorat-ing Brooklyn neighborhoods, as well as the real and imagined inf lux of Blacks, for the neighboring boroughs of Queens, Staten Island, or the suburbs of Long Island's Nassau County, and New Jersey. Blacks and other People of Color moved into these abandoned spaces; especially in crumbling northern and central Brooklyn neighborhoods. Residential landlords decreased services, as they and homeowners couldn't get loans for maintenance and improvements. Central and Eastern Brooklyn also suffered from a plague of arson as capital f light and disinvestment increased. de-industrialization resulted in the loss of well-paying jobs and outflow of capital New York City 1990, 2000, 2010, 2020. As argued by Themis Chronopoulos , racial discrimination and especially de facto residential segregation had, until the 1980s, confined most African Americans primarily to what he calls "Black Brooklyn" in Central and Eastern Brooklyn. He cited Craig Steven Wilder who showed how and why between 1930 and 1953, "…a vast black ghetto stretched across Brooklyn and was becoming the largest concentration of its kind" . According to Wilder, the federal government's New Deal's Home Owners' Loan Corporation , created to avoid further foreclosures and bank failures, contributed to this ghettoization. Bending to real estate and financial industry interests, it graded and then drew color-coded maps . Race, played an important role in this coding, and the lowest graded areas in Brooklyn, usually the most-Black, were colored red. On the 1938 map, almost all of Central and Eastern Brooklyn was thus "relined" . Redlined neighborhoods were generally excluded from mortgage market and properties within those boundaries were devalued. Redlining, in one form or another, continued until the 1980s. It is not difficult to understand how predicting a bleak future for American cities in the 1960s because of the influx of POC contributed to the self-fulfilling prophecy of urban decay. As might be expected, a primary element of this racist formula was the equation of nonwhite habitation with urban deterioration. At the time, it was commonly believed that the people who invaded city neighborhoods tend to be of lower socioeconomic status than those they replace. However, there a large array of data disputed that belief. Some of the most interesting contradictory data concerning the social status of traditional black invaders was provided by Taeuber and Taeuber in Negroes in Cities: Turning to the characteristics of Negroes living in Invasion Tracts and Negro Areas in the six Northern and border cities, two general observations may be made: Negroes in invasion tracts are of higher educational and occupational status, are more likely to be homeowners, and less likely to be crowded than Negro Areas. Movement into previously all-white areas is clearly led by high-status Negroes. Negroes in invasion tracts are often of higher educational status and more likely to be homeowners than whites in these tracts, both before and after invasion. Not only are high-status Negroes the first to enter all-white neighborhoods but owner-occupancy is apparently a major avenue of entry into the new neighborhood. Also, major case study of residential succession by Northwood and Barth found that «Negro Pioneers,» especially in the first wave of invaders, tend to be of higher socioeconomic status than their white neighbors. The first blacks into a white neighborhood have higher hurdles placed in their way than for incoming whites. Blacks will pay higher prices for homes, and, in general, be «more selected» and «acceptable» to dominant whites in the area. Despite the turmoil of the 1970s and early 1980s, Blacks continued to developed community institutions that were instrumental in the survival and later revival of Brooklyn. Bedford Stuyvesant Restoration Corporation, fraternal associations, political clubs, arts, and cultural associations, for example Bedford Stuyvesant Beautification Association -Save Our Magnolia Tree Earth Center, Weeksville other organizations from the making of modern Brooklyn . It must also be noted that in this period Black Brooklyn produced leaders in many fields such as Shirley Chisolm, Spike Lee, Kimberly Denise Jones and Louis Gossett Jr. --- Declining Brooklyn Independent of racial bias and stereotyping, was the fact that crime and arson rates soared in minority neighborhoods in the 1960s and 1970s. An often neglected aspect of these problems, which were universally blamed on the victims, were other culprits. For example, John Barracato who served as a firefighter, fire investigator ,and deputy chief fire marshal with the New York City Fire Department from 1960 to 1976 noted that "landlords who saw a bleak future for their investments in Brownsville were hiring torches to burn their buildings for insurance" . Similarly, in reference to the rising crime rates in Black Brooklyn. In The Knapp Commission Report presented to Mayor John V. Lindsay in 1972, evidence was given of widespread New York City Police Department corruption centered in minority communities such as the south Bronx, Harlem and Brooklyn . In these neighborhoods, police officers were directly and indirectly involved in narcotics trafficking, illegal gambling, prostitution, and illegal bottle clubs as well as protecting contractors who were violating city safety and other construction ordinances. Most germane for crime in Black Brooklyn was The Thirteenth Division in Brooklyn, which was the subject of a major anti-corruption investigation. --- In May, 1972, after the Commission's hearings, Kings County District Attorney Eugene Gold announced the indictment of virtually an entire division plainclothes squad in Brooklyn, which collected payments from gamblers without interruption during the Commission's public hearings in precisely the same fashion being described by Commission witnesses. The indictments and related departmental charges involved a total of thirty-six current and former plainclothesmen, twenty-four of whom were indicted. According to Mr. Gold, at one time twenty-four of twenty-five plainclothesmen in the division were on the pad. Unfortunately, the police corruption problem in Black Brooklyn did not fade away. As reported in The New York Post : Brooklyn's 77th Precinct in Bedford-Stuyvesant was like the Wild West. Cops on the beat were known to steal money from the dead, pocket confiscated cash from drug busts, and pilfer crime scenes for anything left behind by burglars. And when takes off crime scenes weren't enough, the unit created crime scenes of their own. The radio signal "Buddy Bob" was used to gather all parties interested in going on a "raid, " which included anything from breaking into a smoke shop after hours to busting down the doors of drug dealers' dens solely to steal any cash on hand. In May 1986, Internal Affairs caught Officer Henry Winter in a pickup truck with cocaine and strong-armed him into informing on his fellow cops. The resulting tapes and testimony were used to indict 13 officers and have another 90 relocated in an attempt to purge the precinct's toxic culture. It must also be noted that the Knapp commission's star witness, Frank Serpico began his undercover campaign against vice racketeering in the Brooklyn North's 81st Precinct. This period was also punctuated by urban riots in many major cities such as New York and Los Angeles . For Brooklynites, it was the sizzling summer of 1977 Blackout that had the greatest impact. The power failure led to widespread rioting, looting, and arson in predominantly black neighborhoods. Several blocks of the main Broadway shopping district in Bushwick were torched and a third of the remaining stores closed immediately. More than 40% of Bushwick's commercial and retail operations went out of business within a year . The nadir for the city in 1975 coincided with the Mayoralty of Abraham Beame and the New York City Fiscal Crisis that forced a virtual bankruptcy on the demoralized citizenry. New York State's Municipal Assistance Corporation took over the City's financial affairs until 2008. The financial future of the city looked so bleak that Beame's Housing and Development Administrator, Robert Starr, suggested that rather than cutting city-wide services, a "Planned Shrinkage" policy be implemented. The neighborhoods to be cut off from city services to save money were populated primarily by non-whites in The Bronx and Brooklyn. According to Joseph P. Fried in many Brooklyn neighborhoods increasing urban blight was correlated with the inflow of minorities, especially African Americans. One source of hostility to these new invaders are more racially militant blacks. Today there are complaints about the displacement of Blacks due to gentrification, but it had a parallel in the 1960s and 1970s. An interesting analysis and description of the "negro removal" process is provided by Frances Fox Piven and Richard A. Cloward: Other federal programs, such as urban renewal, were turned against blacks; renewal projects were undertaken in most big cities to deal with the black invasion through 'slum clearance, ' by reclaiming land taken by the expanding ghettoes and restoring it to 'higher economic' use .... ...seventy percent of the families thus uprooted were black.... But with local blacks becoming more disorderly and more demanding in the early 1960s, local government began to make some concessions. Urban renewal provides one example. By the 1960s, black protests were mounting against 'Negro Removal' in the guise of 'slum clearance. ' What we currently refer to as 'displacement' was also taking place at the time, although in much more limited way, in the 1970s. According to a report of the National Urban Coalition in 1978, if you are elderly poor, or working class and live in an area undergoing rehabilitation, or in a suddenly fashionable neighborhood, you are a prime candidate for displacement by well-to-do suburbanites longing for the city life they left behind. The Coalition's study of forty-four cities showed that over half of the rehabilitated neighborhoods had higher minority populations before rehabilitation began . Many of the most respected urbanologists of the time strongly criticized these misnomered urban "renewal," and related programs . As early as 1940, more than 90,000 out of almost 110,000 Blacks in Brooklyn lived in a small redlined portion of Black Brooklyn. This geographical concentration of Blacks continued and became more pronounced as large numbers of Southern Blacks moved to Black Brooklyn and whites moved out. It should be noted here, that at the time there was also large influx of Afro-Caribbeans. The segregation of Blacks in Brooklyn increased as Whites moved away from them and relatedly increasingly undesirable neighborhoods to "better" parts of Brooklyn, the suburbs, or suburban fringe neighborhoods in Queens and Staten Island. Whites also engaged various practices of "neighborhood defense" against Blacks and other People of Color . These mechanisms of de facto segregation were facilitated by real estate agents and landlords who employed a range of more and less obvious tactics deny apartment rentals or housing sales to nonwhites. As already noted as to redlining, financial institutions denied business and housing loans to minorities seeking opportunities in white areas. Those who managed entrée to white neighborhoods residents were often verbally and physically harassed. In some cases, they were attacked in schools or public spaces, and were harassed by police because they were frequenting white neighborhoods. According to Chronopoulos : In a general sense, neighborhood defense was an effort to maintain the racial exclusivity of white neighborhoods during a period of political mobilizations by African Americans demanding equality. It resulted in the hoarding of benefits and resources by white populations through the denunciation of Black advancement and the embrace of political entrepreneurs from the right. Citing Joel Schwartz , Chronopoulos also argued that public policies, such as slum clearance and the building of public housing projects also contributed to the racial segregation of neighborhoods. According to Schwartz , under Moses, subsidized housing projects had racial overtones as they accepted only White or Black tenants, depending on where they were built. Almost totally Black, Brownsville became one of many minority neighborhoods in New York to be neglected and suffer from the maldistribution of municipal services . There were also some unanticipated consequences of liberal policies in the 1960s which was framed by civil rights movements, during which «restrictive» covenants and «neighborhood preservation» groups were stigmatized by liberal-minded publics and political authorities. The effect was the elimination of both real and imagined racial discrimination. Subsequently many city neighborhoods, previously defended by social class hurdles, were quickly integrated, and white middle class f light from the city accelerated. According to Thabit, East New York turned from White to Black in only six years because about 200 real estate firms resorted to blockbusting: "'Ripe' blocks were flooded with scare literature; brokers and speculators paraded black families up and down the streets to frighten whites into selling . However, Williamsburg and Greenpoint in North Brooklyn, remained white because of neighborhood defense . It appears that only after a variable «Tipping Point» is reached does an area seem to take a general socioeconomic downturn. To most scientists the tipping point is a simple proportion of non-whites to total population in the area, after which the area slowly or rapidly becomes essentially all non-white . There are other aspects of residential change in the inner city that require more intensive study. For example, a slow rate of home sales in an area can still coincide with a high rate of ethnic change. Often non-white invaders are the only prospective buyers, and whites the only sellers, of neighborhood property. Many residential Brooklyn blocks had rather «normal» turnover rates in the 1960s; approximately four percent per year, but due to racial steering by white and black real estate agents during a ten-year period they shifted from being predominately white to being predominately black. During the two-term Mayoralty of John Lindsay , the NYC Planning Commission several different experiments in Decentralized Government followed: Little City Halls, Urban Action Task Forces, the Neighborhood Action Program, and the Office of Neighborhood Government. These efforts stimulated the growth, perhaps even the proliferation of local community and neighborhood associations in Brooklyn. However, since in the eyes of the general public most of these government programs were associated with neighborhood deterioration there was considerable opposition to being included in such designated "poverty" areas organizations. In the 1970s minority and changing neighborhoods were the focus of much attention by government agencies as evidenced in Central Brooklyn Model Cities, the Office of Neighborhood Government in Crown Heights, and the Ocean Hill-Brownsville Community School District. In the 1970s and 1980s local groups in central Brooklyn aggressively competed for the limited number of various Federal «Poverty Area» designations in order to be eligible for increased funding opportunities and programs. --- In 1977, the NYC Human Rights Commission heard testimony concerning attempts to organize local residents specifically around the issue of redlining. The New York Public Interest Research Group released the results of a study detailing the lending practices of seven Brooklyn banks charging that "the entire borough of Brooklyn is redlined. " Like BRIC, NYPIRG believes that the issue must be addressed on the community level as well as in the broader arena of government agencies and legislatures, and in the fall of 1976 they began organizing around the redlining issue in East Flatbush and Prospect-Lefferts-Gardens. Borrowing techniques used successfully in Chicago, community residents have been meeting with bank presidents and presenting their demands for mortgage loans in their community. Some successes have already been noted and efforts are now underway to enlist the cooperation of local residents in a movement to withdraw deposits from non-cooperating banks. This effort, which is now being publicized as the "Bank on Brooklyn" campaign, is receiving considerable attention in the press and will undoubtedly be watched closely by bankers and other community groups. " In 1968, the Federal Civil rights Act was passed and Title VIII of the Act was the first comprehensive federal open housing law. It banned discrimination on the basis of race, color, religion, or national origin in the sale, lease, and financing of housing, and in the furnishing of real estate brokerage services. It resulted in numerous public and voluntary organizations seeking to enforce its mandate. Fair housing was a major concern of the Neighborhood Stabilization Program of New York City's Commission on Human Rights. The goal of their housing unit was providing minorities with housing option in areas from which they were excluded as well as preventing brokers from steering whites away from integrated neighborhoods. Organizations and Activists acted as fair housing "checkers" or "testers." In the 1970s however a broad spectrum of civic, business and political forces were working with increased vigor to reverse the decline. They joined together in a number of coalitions and succeeded in reversing the borough's fortunes. By the power of their own will and inspired leadership they mobilized resources and a stream of public and private investment began to f low to Brooklyn. They set in motion an economic, cultural, and civic f lowering of modern Brooklyn that accelerated in the 1990s and continues to this day. For example, local activists joined in the fight against the related real estate practices such as "block-busting" and "racial steering." "Blockbusting and panic peddling are real estate practices in which brokers encourage owners to list their homes for sale by exploiting fears of racial change within their neighborhood" ) As a result Black Brooklyn neighborhood associations became a party to a 1977 "anti-solicitation" order by the then New York State Secretary of State Mario M. Cuomo. It should be noted that under the leadership of Eleanor Holmes Norton, The New York City Commission on Human Rights had also ordered non-solicitation orders in aggrieved neighborhoods. Although there were several successful challenges to specific provisions of the New York State order, the order did bring needed close attention to these damaging practices, as well as restrictive legislation resulting from it, and for a time they lessened. The order stated in part: …that all licensed real estate brokers and salespersons are hereby restricted and shall cease and desist from soliciting listings of properties for sale and for purchase in any manner including but not limited to solicitation by means of letters, postcards, telephone calls, door-to-door canvassing, window signs, billboards, advertisement by handbills or news publications in the counties of Kings and Queens, except that brokers and salespersons may solicit listings of properties for sale and for purchase in newspapers of general circulation. That all solicitation be and is hereby prohibited until further notice . --- New York City's Second Fiscal Crisis Commenting on a Center for an Urban Future study, New York in the World, by Glenn von Nostitz , Patrick McGeehan The effect on the relative aff luence of residents of Brooklyn, Queens and the Bronx was stark: The report stated that the median income for individuals in each borough, as a percentage of the nation's median income, fell significantly from 1970to 2008. Public discourse about the crisis proliferated in American public discourse. For example, since 2008, the New York Times published more than 1,000 articles about foreclosures and the mortgage crisis. Veteran city journalist Sam Roberts summarized data from the American Community Survey . The ACS showed that, adjusting for inflation, New Yorkers' median household income declined between 2006 and 2009 from $48,631 to $48,355. City home values registered the sharpest declines, to $517,000 in 2009 from $557,300 in 2007. In the same period, the population dependent on food stamps rose to 17.2 percent from 13.3 percent in 2007 although the poverty rate remained unchanged . In 2008, the City's own more sophisticated measure of poverty classified 22 percent of New Yorkers as poor. Since 2007, the income gap in the city appeared to have widened somewhat as the proportion of people who were making $200,000 or more and those earning less than $10,000, adjusting for inf lation, rose from 5.9 percent to 6.5 percent and from 11.1 percent to 11.5 percent respectively . Sassen argued that the securitizing of mortgages created a new channel for extracting household income, bundling it up with other types of debt and selling it off to financial investors. Extending this concept to modest-income households opens up a global potential market comprising billions of households. These mortgages were often marketed to house holds that lacked the capacity to meet the monthly mortgage payments without full disclosure as to the risks and possible changes in interest rates. In this way, household savings could be extracted. This was evident in the local-level data showing that African-Americans and low-income neigh borhoods had a disproportionately higher incidence of subprime mort gages in all mortgages from 2000 to 2007. She cited extreme differences between Manhattan and other New York City boroughs: In 2006 less than 1 percent of mortgages sold to Manhattan home-buyers were subprime compared to 27.4 percent in the Bronx. --- Subprime Mortgages and Foreclosures During the same period, there was also a sharp rate of growth of subprime mortgages in all boroughs except Manhattan. A further breakdown by neighborhoods showed that the 10 worst-hit neighborhoods were poor, and in them between 34 percent and 47 percent of mortgages were subprime. Controlling for race a similar pattern was evident, as whites, with far higher average income than all the other groups in New York City, were far less likely to have subprime mortgages than all other groups, reaching 9.1 percent in 2006 compared with 13.6 percent of Asians, 28.6 percent of Hispanics and 40.7 percent of blacks . All of the top 10 CDs with the highest rates of subprime lending in 2006 were well-known nonwhite minority areas; five were in Brooklyn. One of the most striking effects of the current crisis was manifest in home loan foreclosures. According to Michael Powell and Jane Roberts, mortgage foreclosure rates in the region were highest in areas with high minority populations . As expected, the distribution of foreclosures is not random, but covaries with poverty and race. In Brooklyn, for example, the CDs hit hardest were 3 Bedford-Stuyvesant , 4 Bushwick , and 5 East New York . Median Household Income in these CDs for 2005-07 fell between $28,000 and $32,000. The proportion of the population receiving income support in these Brooklyn areas varied between 44 percent and one-half. In the areas least affected, such as CD 2 Brooklyn Heights, Fort Greene , CD 6 Park Slope, Carroll Gardens , CD 10 Bay Ridge, Dyker Heights , 15 Sheepshead Bay and CD 18 Canarsie, Flatlands the median household income is substantially higher, ranging from around $46,000 to more than $77,000, with income assistance between 15 percent and one-third .The foreclosure data for Bedford Stuyvesant and Bushwick in Brooklyn was startling, especially in the area north of Broadway in Bushwick and between Atlantic and Gates Avenues in Bedford Stuyvesant . The New York City Department of Housing Preservation and Development invited developers and local organizations to submit applications for the funding of proposals to acquire and redevelop foreclosed, abandoned, or vacant properties in Census tracts most affected by foreclosures. The program uses stimulus funds from the US Department of Housing and Urban Development to prevent further declines in neighborhoods most severely impacted by foreclosures. Of the 20 neighborhoods Targeted by the Neighborhood Stabilization Program 3 were in the remains of Black Brooklyn and most of the others were where Black Brooklyn residents had moved such as Flatlands/Canarsie, and East Flatbush. During the crisis, New York City Consumer Affairs Commissioner, Jonathan Mintz, announced an expansion of the City's Financial Empowerment Centers . The centers provide free homeownership and foreclosure prevention counseling. There are 20 Financial Empowerment Center locations, including three new ones in the Garment District and Lower East Side, in Manhattan, and Melrose, in the Bronx. As might be expected, given the uneven effects of the recession in New York City, these three as well as those in the complete list of Help Centers, are all located in the previously identified problem areas for New York City's Neighborhood Stabilization Program. Distressed neighborhoods such as these tend to have clusters of anti-poverty services and businesses catering to basic needs at low cost. --- Political Disempowerment Economic prosperity and housing, although significant, were not the only public goods Black Brooklynites were systematically deprived of. Black institutions and organizations, especially those with electoral political potential suffered greatly during the 20th century from discrimination in the form of gerrymandering as well access to registration and voting. So much so that The Federal Voting Rights Act, usually associated with racial discrimination in the Deep South, applied to Brooklyn's Congressional Districts. According to Doug Muzzio : The law was a culmination of the black civil rights movement and a cornerstone of Lyndon Johnson's great society. With it, the federal government would finally fulfill the promise of the Fifteenth Amendment, enabling blacks to exercise the franchise unhindered by exclusionary devices such as literacy tests, white primaries, poll taxes and grandfather clauses. The law prevented states from enforcing discriminatory tactics aimed at preventing blacks' fair opportunities to participate in the voting process. Currently, the law covers Alabama, Alaska, Arizona, Georgia, Louisiana, Mississippi, South Carolina, Texas and Virginia; of California, Florida, Michigan, New Hampshire, North Carolina, South Dakota-and Brooklyn, Queens, and the Bronx. As a result of a suit brought under the Voting Rights Act in 1967, Black Brooklyn, which was cut up among several, mostly white Congressional Districts, was rearranged to create one that enabled Afro-Caribbean New York State Assemblywomen Shirley Chisholm to win in 1968. The act was amended in 1970 to include jurisdictions that had literacy tests, and in which less than 50 percent of the voting age population was registered or voted in the 1968 presidential election. In July 1970, the Attorney General found that New York State maintained a test or a device that adversely affected minority voting participation. In March 1971, U.S. Bureau of the Census found that fewer than 50 percent of voting age residents were registered in Bronx, Kings, and New York counties. Together these determinations required the Bronx, Brooklyn, and Manhattan to become "covered" jurisdictions subject to pre-clearance . For a closer look at ethnic and racial politics in Brooklyn see Howell , Krase and LaCerra . --- Immobility: Race, Poverty According to Sheller and Urry , although the significance of mobility in analyses of spatiality and spatial restructuring has been recognized by many social scientists, they continue not to fully '… recognize how the spatialities of social life presuppose, and frequently involve conf lict over, both the actual and the imagined movement of people from place to place, event to event ' . Ethnic population maps of Brooklyn since the 1920s show the remarkable immobility of Black, Jewish, and Italian enclaves. Today most of New York's Ultra-Orthodox, Jews ironically, reside in Wirth's 'voluntary' ghettos of various degrees, whereas most Blacks occupy rather "involuntary" ones . The immobility of Orthodox Jews is primarily due to regulations that tie them to local religious leaders and institutions. For Blacks limited residential mobility is due in large part to discrimination. Brooklyn's dwindling Italian American population remains tied to historically important immigrant enclaves, and is therefore voluntary. Beyond race and ethnicity, poverty increases the immobility of these already immobile racial and ethnic groups . The Community Service Society mapped poverty in New York City and found that poverty and low incomes, unemployment, subsidized housing, emergency rent assistance, Housing Court actions, emergency feeding sites, disconnected youth, and low educational attainment, were all highly concentrated in Upper Manhattan, the South Bronx, and Central Brooklyn. They concluded, 'New Yorkers are living with the effects of poverty in every part of New York City, but the experience of poverty remains closely tied to place. Half of the city's 1.4 million poor people live in neighborhoods where the poverty rate is at least 24.8 percent , and one-quarter live in neighborhoods where the rate is at least 34.1 percent' . Not unsurprisingly, Bloch and Roberts reported mortgage foreclosure rates were highest in areas with high minority populations. In Brooklyn, the Community Districts hit hardest were Bedford-Stuyvesant , Bushwick , and East New York . Mortgage foreclosures add to neighborhood stress because abandoned and boarded up buildings become signifiers of poverty, which stigmatizes the surrounding area. --- Immobility: Stop and frisk According to Tesfahuney «Differential mobility empowerments ref lect structures and hierarchies of power and position by race, gender, age and class, ranging from the local to the global» . Places and technologies that enhance the mobility of some can do so while at the same time they decrease the mobility of others, especially as they try to cross borders . Therefore, it is not surprising to discover that race and poverty-induced immobility produce other patterns and concentrations such as for crime and arrests. If authorities wish to make arrests, the geography of race and class is metaphorically like shooting fish in barrel. Gelman et al. , Fagan and Kiss looked at claims of racial bias against the New York City Police Department's 'Stop-and-Frisk' Policy. Blacks and Hispanics represented 51% and 33% of the stops but were only 26% and 24% of the New York City population. Most important for mobility issues, they found evidence of stops: … that are best explained as 'racial incongruity' stops: high rates of minority stops in predominantly white precincts. Indeed, being 'out of place' is often a trigger for suspicion … Racial incongruity stops are most prominent in racially homogeneous areas. For example, we observed high stop rates of African-Americans in the predominantly white 19th Precinct, a sign of race-based selection of citizens for police interdiction. We also observed high stop rates for whites in several precincts in the Bronx, especially for drug crimes, most likely evidence that white drug buyers were entering predominantly minority neighborhoods where street drug markets are common. A map created by the Center on Race, Crime and Justice, John Jay College of Criminal Justice showed of the Precincts with more than 55,000 stops 2003-2008, 4 of the 8 were in the remains of Black Brooklyn, 73 Ocean Hill Brownsville, East New York 75, Crown Heights 77, Bedford Stuyvesant 79 . Unfortunately, a more recent study showed that discrimination in stops and frisks has continued . --- Stopped here Education Redlining According to A Rotting Apple: Education Redlining in New York City , the long-term and continuing problems of meeting the needs of poor nonwhite students in Community School District 17 are the result of a New York City-wide pattern of "Educational Redlining" . The main conclusion of this Schott Foundation for Public Education report is that New York City's public schools' student's educational outcomes and opportunity to learn are more a product of where they live than their own abilities. Primarily because of New York City policies and practices that result in an inequitable distribution of educational resources and intensify the impact of poverty, children who are poor, Black and Hispanic have far less of an opportunity to learn the skills needed to succeed on state and federal assessments. They are also much less likely to have an opportunity to be identified for Gifted and Talented programs, to attend selective high schools or to obtain diplomas qualifying them for college or a good job. High-performing schools, on the other hand, tend to be located in economically advantaged areas. New York's school system is considered among the most racially and socioeconomically segregated in America. The most recent iteration of educational racial inequity was raised in reference to public Specialized High Schools and educational enrichment programs. A lawsuit by civil rights attorneys and student plaintiffs in State Supreme Court in Manhattan was filed to fundamental change how New York City's public school students are admitted into selective schools. It argues that the city's school system has replicated and worsened racial inequality by sorting children into different academic tracks as early as kindergarten, and has therefore denied many of its roughly one million students of their right to a sound, basic education. Defendants include the New York State Governor, New York City Mayor Bill de Blasio, and the incoming school's chancellor Meisha Porter . --- The Gentrification of Black Brooklyn Adding the latest insult to injury has been the displacement of Black residents and businesses by the Gentrification of what was left of Black Brooklyn, parts of which had been gentrified by Blacks themselves. According to Chronopoulos Black gentrification was apparent in the 1970s with the growth of the middle class. Due to limited choices Middle-class Blacks Facing moved to low-income, mostly minority areas in Northwest Black Brooklyn and eventually southward and eastward in the borough. The final decade of the 20th century witnessed a revival in Brooklyn's fortunes. Crime ebbed during the 1990s, and neighborhoods in Black Brooklyn, like Bedford Stuyvesant, Bushwick, Fort Greene, and Clinton Hill began to spring back to life as the outflow of capital in the city reversed. The displacement and gentrification in North Brooklyn was also pioneered by a new generation of artists, f leeing from the high rents in Manhattan in northern Williamsburg, and Greenpoint . A seemingly benign form of gentrification in the 1970s was "The Brownstone Revival Movement" that was part of the national «Back to City» movement. The movement aimed to recreate and preserve traditional urban middle-class residential values in the face of urban decline noted earlier in this chapter. Since a much smaller proportion of Blacks were in the higher classes, and gentrification is primarily an upper middle class invasion process, Blacks became the losers in the competition for these increasingly desirable spaces. It should be noted that Black Brooklyn always had many positive qualities such as historically valuable housing stock and ease of transportation to Manhattan, but, like Harlem, was stigmatized by its Black occupation. It is obvious, therefore, that the their "ethnic cleansing" would become an important part of the process of "upscaling" . Two of the most inf luential were the Brooklyn Brownstone Conference and the city-wide New York Brownstone Revival Committee in their "Back-to-the-City" movement activities. Founded in 1968, ironically, the organization had campaigned against mortgage red-lining and got some banks to offer mortgages for brownstones in Black Brooklyn. From 1973 to 1986, BRC co-sponsored with the Brooklyn Brownstone Conference the annual Brooklyn Brownstone Fair that resulted in the gentrification of many Black Brooklyn neighborhoods and the displacement of Black residents. Unfortunately, this activism against urban deterioration changed to the celebration of what Neil Smith would call urban neighborhood "revanchism" which "blends revenge with reaction" . In general urban revanchism has been viewed as: "reaction against the successes of social democracy, the welfare state and socially responsible urban policy during the middle half of the twentieth century, and revenge against the malefactors held responsible for urban decay and the supposed 'theft' of the city" . In Northwest Black Brooklyn, Whites became the numerical majority after 2013 Just as the increases in housing costs in Manhattan brought white gentrifiers to North Brooklyn in the 1980s, as they subsequently increased in super-gen-trifying Williamsburg in the 1990s, first-wave gentrifiers and newcomers ventured further south into Central Brooklyn and Crown Heights. A 2019 study by Kristen Lewis and Sarah Burd-Sharps found: The five neighborhoods with the largest increase in White residents accompanied by a decrease in residents of another racial or ethnic group were all found in Brooklyn-Bedford-Stuyvesant, Williamsburg, Clinton Hill, Park Slope andGowanus, andCrown Heights North. Between 2000 and2010, these neighborhoods all saw an increase of between 6,700 and 15,600 White residents, paired with a simultaneous decrease in Black residents , Latino residents , or both . It must be also noted that between 1990 and 2020 as the total population of Brooklyn increased by 347,788, the Black population decreased by 38,622. --- Conclusion It would take several volumes to discuss the many other examples of racial inequities in Brooklyn previously discussed in this chapter, such as housing evictions , environmental racism , food deserts , and access to COV-ID-19 testing and treatment. Employing a distributive social justice perspective, prefaced by the United Nations Sustainable Development Goals , this essay has focused on the most salient outcomes of the conflicts and competitions over Brooklyn spaces and resources as they have impacted Brooklynites of African descent. To conclude this chapter, I restate the guiding principle for all 17 United Nations Sustainable Development Goals -"Leaving no one behind," and ask whether Black Brooklynites have received their fair share of public goods over their half-millennium of involuntary and voluntary residence in the borough. Considering even the limited evidence presented here, the answer is clearly «No.» In the 1970s «Critical Race Theory» was developed by lawyers, legal scholars, and activists who saw that the progress and momentum made during the Civil Rights Era had either slowed and in some cases ended . The theory provides an understanding of how race is not only socially constructed but how those constructions are institutionalized and negatively impact different minority groups at different times . As demonstrated in this essay about Black Brooklyn, the negative impacts are numerous and obvious. As all my work is pragmatic in orientation, I hope this essay will motivate positive changes. In conclusion, I look forward to seeing in the future what would a socially just Brooklyn, or any other city around the globe, would look like. --- Declaration of Conflicting Interests The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International which allows reusers to distribute, remix, adapt, and build upon the material in any medium or format for non-commercial purposes only, and only so long as attribution is given to the creator. --- Author Biography
The Borough of Brooklyn, New York has evolved over the past half-millennium from a sparsely settled, lush woodland, to a bustling super-diverse, post-industrial city of almost three million residents. This essay looks at the experiences of those who, over that long period of time, have made their homes in this territory. The first Brooklynites, of course were Native Americans such as members of the Canarsie tribe, but since them there has been a virtual Roman Fountain of migrants and immigrants from every corner of the nation and the globe. This enormous population movement can easily be characterized as a series of what classical urban ecologists such called "invasions and successions" (Park, et al., 1925). Unfortunately, as a consequence of conf licts and competitions over Brooklyn spaces and resources, there has been an unequal, and inequitable, distribution of public goods to "winners" and "losers." Here we will address that, periodically troubled, history from a "distributive social justice" perspective, with a special focus on those of African descent (Rawls & Kelly, 2003). that will also be prefaced by the United Nations "17 Sustainable Development Goals" (United Nations, 2022).
implicated in gender, class, and transnational processes. Moreover, my interest to understand how healthy eating is accomplished was not fulfilled by existing literature. For example, to assess Latino immigrants' diets, health researchers primarily measure Latinos' consumption of macronutrients. The social, cultural, emotional, and contextual elements of the diet are often absent in acculturation and diet research conducted by sociologists , as if people's social interactions with others are insignificant when they eat. Although humanities researchers have examined national and regional foodways among Latin Americans and U.S. Latinos, it has usually been limited to one specific nationality or geographic space . Much less has been written about how U.S. Latina/o immigrants accomplish healthy eating and how these lay health practices transform across borders. Moreover, healthy eating has not been a context for such an interactionist analysis on the formation of Latinidad. The study will be organized by first comparing symbolic interactionist performance to poststructuralist performativity; the latter being the most frequently used theoretical approach to examine Latino identity formation. Interactionist performance and performativity have overlapping features, but interactionist performance differs with respect to creation, agency and how organizations and institutions shape performance and representation. Second, I will provide a processual description of the structural conditions and discourses that shape comiendo bien to demonstrate how these participants construct Latinidad through their shared performance of eating and preparing meals. I end by discussing how interactionist performance can expand the examination of Latinidad because it encourages the examination of identity formation through reflexive subjects' mundane acts. This article will not focus on the nutrition discourses shaping comiendo bien because there are multiple positions these families take to perform "healthy" eating, which is beyond this paper. That specific analysis is discussed elsewhere . Despite the diverse representations of health, these families still reproduced performative aspects of comiendo bien in their diet. --- PERFORMANCE IN SYMBOLIC INTERACTION AND PERFORMATIVITY IN LATINO STUDIES The examination of Latinidad has been important for several reasons. First, persons from Spanish and Latin American descent are the U.S. racial/ethnic minority majority, and this population continues to grow. Second, the Hispanic/Latino population in the United States has become more diverse in terms of national origins . Third, like the author and five families in the present study, more self-identifying Latino families are unions between Latin Americans from two different countries. Scholars and policy makers alike question whether these diverse groups will align and unify and how these particularities and intersectionalities are important . Latino Studies scholars have often used performance as a metaphor and analytic tool to examine the construction and enactment of Chicanísmo Latinidad , gender and queer identity . The examination of performance has largely been relegated to the examination of plays , films , television shows , underground performances , and literature written, produced, and performed by Latina/o artists who often remain excluded from the mainstream media and art world. In fact, most of these scholars adapt a poststructuralist, Butlerian approach to performativity. For instance, by using Judith Butler's performativity as laid out in Bodies that Matter , Jonathan Inda proposes to create a framework for racial performativity to describe the construction of the racialized, Chicano body. Inda writes, "race is the effect of discourse." Racializing subjects is done through performativity, or the process by which normative discourses are repeating through action and become reified through their repetition. Poststructuralist approaches, such as Butler's, have facilitated scholars' approach to examine Latina/o identity as a malleable enactment, particularly how bodies of knowledge, constitute racial/ethnic positions. Media and artistic social worlds are excellent settings from which to examine the construction of marginalized identities because it is often through art that people feel most free to resist the status quo, or present their many selves. However, symbolic interactionists would also assert that resistance to stigmatized positions occurs in everyday life , and for this reason, there is value examining how Latino immigrants construct Latinidad through their daily eating practices. With the exception of Kotarba, Fackler and Nowotny , who describe how the emerging Latino music scenes in Houston provides sites for self, identity, and nationality, scholars have rarely utilized interactionist approaches to examine Latinidad. This may be because poststructuralist approaches are more prevalent in the humanities where much of this scholarship originates. It could also be that there are few Latina/o scholars formally trained in symbolic interactionism. Nevertheless, symbolic interactionism's approach to performance can contribute to understanding the construction of Latinidad because of its emphasis to examine everyday activities, agency in social action, and to focus on positive practices, not just racial/ethnic minority's deficits in the larger U.S. society. Symbolic interactionists utilize performance to examine "the liminality and construction" of inequalities related to gender, race, or other structural positions , but I saw the benefit of using performance to analyze comiendo bien because key informants2 strongly believed that comiendo bien could not be practiced by Latinas/os who were not partnered or living with family, because their eating habits were not accountable to another person. Erving Goffman's Presentation of Self specifically focuses on the self that people put forward according to what they believe are others' expectations, or one's impressions of themselves that they wish to create. Unlike Goffman, Anselm Strauss focuses on representation as it moves away from analyzing just a single situation of interaction, and more of the multiple interactions that have a history and can be located within social structures and organizations. If Strauss's representation is applied to comiendo bien, the focus is not solely on carrying out the act in order to meet others' expectations of what they want to see us eat, but also to understand an actor's ability to symbolize a representation of collective identity. Representation thus considers how actors are symbols and/or agents of collectivities and how they try to perform "through non-ambiguous signs " . The problem with interaction, such as enacting comiendo bien, is that multiple representations can be displayed simultaneously, not only in one single face-to-face interaction, but also with objects and organizations. Distinct from Goffman , Strauss would also study how other organizations, meanings, and interactions shape the representation. There has been critique vis-à-vis the usefulness of performativity in understanding enactments of identity, particularly with issues of agency and social change . However, both interactionist performance and performativity share parallels. For instance, they are both critical that gender or race can be attributed to essential human qualities, or that people merely play out human roles . Although both perspectives emphasize activity, for interactionists, structural positions are an outcome of people's interactive, reflexive "doing," while Butler's activity emphasizes how subjects become gendered through discursive activity . --- BRICOLAGE OF INTERACTIONIST CULTURAL STUDIES, SITUATIONAL ANALYSIS, AND ETHNIC FOODWAYS This examination of comiendo bien draws from interactionist cultural studies , the framework for examining continuity and change in ethnic foodways , and the analytic techniques of situational analysis . ICS examines how objects are given meanings and enacted through these meanings by critically engaging questions of subjectivity, politics, embodiment, and emotion. The emphasis is to understand how cultural products and texts are constructed, produced, and consumed. As a supplement to constructivist grounded theory the emphasis in situational analysis is to examine how action among collectivities is created, transformed, and continued in the situation by examining multiple data sources, acknowledging heterogeneities in one's data, and recognizing that participants are embodied and situated . Situational analysis augments analytic techniques of grounded theory by mapping the nonhuman, human, and discursive elements present in the situation and the discursive positions that participants take . Examining Latino immigrants' diets as social processes presents the participants as an ethnic group that enacts healthy eating through many identities, rather than as a list of foods that an ethnic group consumes. Two nonprofit organizations, Mujeres Unidas y Activas and CARECEN assisted in the recruitment of families for this project. I posted recruitment flyers in these organizations stating that I was conducting a study examining family eating practices, along with my contact information. I did not to use the words "health" or "diet" on the flyer because I did not want to assume that comiendo bien represented health. I also made announcements about this study at these organizations, before their meetings commenced. I volunteered 6 hours a week at each organization in exchange for their assistance with recruitment. Volunteering allowed me to observe most of the participating families in a context outside of their home. Describing comiendo bien is challenging because of the danger of homogenizing a group that is historically, culturally, linguistically, and racially complex, and sometimes incohesive. Therefore, it is important to describe how "Latino" immigrants were approached in this project. I decided to leave the label open until I discovered how my participants identified themselves and others of Latin American descent. In the recruitment flyers, I specifically stated that I was looking for families in which "the person responsible for buying and preparing food was an immigrant from a Spanish-speaking Latin American country," so as to not exclude anyone who did not identify with the labels "Hispanic" or "Latina/o." Ultimately, I chose "Latina/o" because this is the label that the participants used to identify themselves and other Spanish-speaking, Latin Americans residing in the United States. However, prior to migrating, participants identified themselves vis-a-vis their nationality. I use this label acknowledging my participants' regional and national differences. I conducted two in-depth interviews with key informants and had three or more experiences of participant observation with each family. Key informants were persons 18 years or older, responsible for purchasing and preparing food for their family, and who migrated from one of the 21 Spanish-speaking, Latin American countries. The family cook was considered a key informant because they generally know what their family members like to eat and executed ethnic foodways in San Francisco. I used a semi-structured interview guide to gather information about the family's migration trajectory to the United States, beliefs and practices around eating, food, health, and food preparation preimmigration and during U.S. settlement. The key informant interviews took place in Spanish and were 60 to 90 minutes in length. The time between Time 1 and Time 2 interviews was usually 3 months. All interviews were audio-recorded and then transcribed verbatim. Families in their multitude of formations were included in this sample because family life is accomplished irrespective of biological ties. Participant observation of the family meal took place months after completing key informant interviews to ensure that I had the families' trust. During the participant observations it was important to identify how families' observed eating practices differed from the key informants' description of comiendo bien. Field observation also provided information about how cooks negotiated family members' food preferences and how they negotiated interpretations of health into their cooking. Field observations were handwritten and transcribed soon after for later textual coding in Atlas.ti 5.2. --- The Families This description of comiendo bien is based on twenty-seven 3 in-depth interviews and over 7 months of participant observation with 15 Latino immigrant families living in San Francisco between 2008 and 2010. The fifteen families represent six Latin American countries: El Salvador , Guatemala , Honduras , Mexico , Nicaragua , and Peru . There were five families in which parents were from two different countries, Mexico and El Salvador , Mexico and Peru , or Guatemala and Peru . Eight of the key informants entered the United States between 1992 and 1999, while seven entered between 2000 and 2008 . Eighty-six percent of the mothers had worked in Latin America, while 50% of the mothers, exclusively from Peru and Central America, had some postsecondary education and were in semi-professional positions in Latin America. Although I did not collect specific data on class, the majority of the participants rented small apartments, one family lived in a trailer, and one family was transitionally housed in a shelter during the study, indicating that most were low-income families . --- WHAT IS COMIENDO BIEN? Structural Conditions Shaping Comiendo Bien Comiendo bien is a practice that maintains physical and emotional wellbeing in order to reduce illness and the use of medical services. Many of these families had limited access to 3. Three Time 2 interviews could not be completed because the key informants' phones were dis-connected. medical care in Latin America because of geographic or financial limitations. Limited access to medical care is one of the structural conditions that preserved comiendo bien in San Francisco. Specifically, many families lacked an even distribution of medical insurance within the family. If the children in these families were U.S. citizens they may have had publicly funded health insurance, but their parents were usually uninsured, undocumented, and/or lacked the funds and time to seek medical care. For example, Margarita's family of five from El Salvador, continued comiendo bien in San Francisco because they no longer had any health insurance. "Here, I feel that we are trying, with my husband, to eat healthier … possibly because we do not count on a medical insurance. What we are trying to do is take care of our-selves to not go to the hospital for an emergency … " Margarita and her husband demonstrate agency in their choice to improve their family's diet given their limited access to medical care. In a few cases, some of the mothers were hesitant to use medical services because they were apprehensive of the price and ingesting chemicals that would have multiple side effects, like Lorena described below. They [Latinas/os] will stay sick before going to the doctor; first, because the doctor is costly, because at times, there is no health insurance. And, because, apart from the medication, how much is it going to cost me? Is it going to cure me? Or, no? The chemicals are good, too, but they have secondary effects. Like Lorena, Latino immigrants in this project were not practicing comiendo bien to resist the neoliberal medical system, if they had the access and resources they would actively seek medical services, but they were critical of the reductionist, pharmaceutical approach to healing provided by most U.S. healthcare providers. Below, I provide a brief description of the participants' ideal representation of comiendo bien in order to situate the subsequent actions and discourses that will be discussed. The practice of comiendo bien is primarily imparted and led by mothers cooking, summoning their families' memories of dishes, and replicating their mothers' recipes to create a platotóte, an "abundant plate," which represented the structure of the meal that families ate to accomplish comiendo bien. The platotóte included a "starch" , a "protein" , "legumes" , and "vegetables or fruit" . They ate all of their food on one plate and in one course. In many cases, all of these foods could be combined in one-pot dishes such as caldos , and stews, in which vegetables, meat, legumes, and/or grains are cooked together. Ideally, the platotóte would be consumed twice to thrice a day. Healthy foods were considered those that were natural, minimally processed, and homemade. In the enactment of comiendo bien, mothers and fathers are primarily responsible for visually gauging their family, in particular, their children's consumption of food on their plate. To eat everything on one's plate was considered a sign that they ate well. One's embodied accomplishment of comiendo bien was feeling full. More importantly, comiendo bien is accomplished when these meals are shared among family members or an intimate group. It was questionable whether someone accomplished "eating well" if they ate alone. Margarita described how her husband ate his first years in San Francisco without her and the children: Interviewer: Do you believe that Latino immigrants eat well in this country? Margarita: Depending … because let's say that among family, I believe, they eat well. But if we look at the situation of men, who are here alone, then they do not know where to start, they don't have anyone who could cook for them in their house, someone who would have a good meal waiting for them. And, possibly, outside, they buy food that they can start with, but emotionally, they do not eat well. So, how would I tell you? For example, my husband tells me that when he was alone many times, he would eat his meals, he could eat well, and everything, but to be alone, right? It is not that you will enjoy your food. He's thinking about his family … Commensality is the social experience of sharing meals with others and it framed every cook's description of comiendo bien. Before migrating to the United States, participants described consuming meals commensally, among family, friends, or co-workers. Families are the core commensal units, although there are other units based on friendships and intimate relationships. In Latin America, most of the key informants and their partners were either single people living with their parents, or with their partner and child. Living with others and having more opportunities for social engagement in Latin America facilitated sharing meals. The event of sharing a meal with the family is a realization of comiendo bien because it is when parents' earnings are symbolized in the meal, family caregiving is displayed, and parental authority is enforced when family cooks monitor others' consumption. Through commensal interactions, individuals learn how to reproduce and monitor their own comiendo bien. The dinner table is also the stage where Latinos present their healthy and compliant self to their family members, particularly children to their mother. In San Francisco, migrating alone, working longer hours, and the conflicting schedules with other family members decreased commensality. Another structural condition that shaped these families' Latin American sender communities was food insecurity, despite being employed. Food insecurity exists when people do not have physical or economic access to sufficient, safe and nutritious food to meet their dietary needs and food preferences . Those participants from rural areas experienced the most repetition in their meals and the least experience eating outside of the home. These participants often dealt with food insecurity by buying affordable ingredients, such as beans and tortillas, and repeating dishes at multiple meals. The criterion to eat everything served on one's plate arises from conditions of food insecurity and limited opportunities to eat outside of meals. Key informants attributed the diverse structure of their platotóte to the importance of consuming a variety of foods for optimal health. However, the diverse and abundant contents of a platotóte may also stem from other experiences. I used to be ashamed of taking out my refried bean sandwich [to school] where many would take out their ham sandwich and such and then they would ask me, "Did you bring a sandwich?" And, I would tell them, "No." And I, what I would do, is wrap the sandwich well and I would throw it in the garbage because I said, "How are they going to see me with a refried bean sandwich again?" Prior to migration, restaurants were not a regular source of meals for any of these immigrants due to the high cost. Those from rural areas and others migrating before 1999 described not having many street vendors or food establishments in their communities. Not regularly eating food prepared outside of home, for reasons related to access and hygiene, may have shaped the condition in which eating processed food and food prepared outside of the home was not conducive to comiendo bien. In their sender community, women were charged with cooking responsibilities depending on the amount of time spent outside of the home for employment. The mothers or eldest daughters in the family mainly prepared meals. However, if the mother or the eldest daughter were formally employed, they only had cooking responsibilities for certain meals during the day, or during their days off. Hence, the woman who worked the least amount of time outside of the home would prepare most meals for the family. Unlike much acculturation and diet research, which assumes that Latinos' diets deteriorate partly because Latina immigrants enter the U.S. workforce , there were eight mothers who bore the "double duty" of working and feeding their families in Latin America. Mothers' reproduction of comiendo bien is generally expected because women often represent having innate abilities to assess what is good for their children. However, there can be transgressions in gendered activities tied to the reproduction of comiendo bien if mothers are not present in the family. There were two Salvadoran families in which the fathers assisted in food preparation. For example, Margarita's husband prepared healthier meals for the family because he enjoyed modifying recipes that alleviated his hypertension. In another example, when Veronica was growing up in El Salvador her father raised her. He assumed the feeding responsibilities and imparted healthy eating habits to his children in the absence of their mother or another woman. This demonstrates that Latinos are not incapable of feeding their families. The responsibility to feed and visually gauge fullness is reified and relegated to women, but certainly not concrete or immutable. During home visits, I also noticed instances where men could not cook, but helped purchase last minute items at a nearby market, or calmed unruly children while the mother was cooking. Men were often absent from cooking, both in Latin America and San Francisco, but always carried the responsibility to procure earnings and plan the menu. --- Discourses Informing Comiendo Bien Discourses are ways of representing various orders of truth through actions and speech . Here, discourses inform and regulate the embodied aspects of comiendo bien, as well as its representation. Furthermore, comiendo bien is not merely a configuration of discourses, it is also a normative discursive act that regulates and reinforces parents' authority, enactments of gender, motherhood, nationality, and health both in Latin America and San Francisco, albeit with local variations. The discourses and embodied practices presented here shape comiendo bien and demonstrate how Latinos collectively create Latinidad. Comida casera and comida callejera-These families privileged the preparation and consumption of homemade meals, which originated in their respective communities in Latin America. Comida casera and comida callejera are in vivo codes that represent a discourse about the relationship between food prepared inside and outside of the home. Comida callejera could be a meal at a restaurant, a pastry from a bakery, or a snack from a street vendor-any food prepared outside of the home. For example, if a family ordered a rotisserie chicken with side dishes to eat at home it was far from comiendo bien simply because it was not prepared at home. Comida callejera was considered unhealthy and did not even represent "eating." For example, Susana's 18-year-old son moved in with his girlfriend when we had our second interview. I asked Susana if his girlfriend cooked, and Susana said, "No. What is she going to cook? She does not cook. No. They only eat in the street and if you saw him, he's so skinny!" Susana implied that her son's new diet and his girlfriend's lack of cooking caused his weight loss. The criterion to eat comida casera in order to accomplish comiendo bien also reinforces the expectation for women to feed the family. Living in an immigrant community with other Latin Americans and having markets selling Latin American products facilitated the representation and intersubjective performance of motherhood. The interpretation and presentation of comiendo bien are also influenced by the presence and judgment of other Latinas/os, and one's perceptions of their judgments. For example, Denise believed that Latina mothers in San Francisco were not upholding customs by cooking less for their family. Below, Denise is indirectly referring to her tenant, a Peruvian single mother: Well, it depends because immigrants that come here and lose their customs from their country, now they do not want cook; they buy food that is already cooked … I have seen mothers who do not cook and they buy their children McDonald's, for the kids, and that is the meal. Social engagement in immigrant communities thrusts new Latina immigrant mothers to perform motherhood and its related duties in the United States. They are at risk of being judged by other Latinas for not preparing comida casera for their family. To curb their family's desires to eat out and manage their budgets, parents often described comida callejera as unhygienic or detrimental to health. Eating homemade meals prepared with natural ingredients promoted children's appreciation for diverse flavors and food that parents believed were good for their health. Eating comida callejera also devalued both a woman's efforts to feed and other family members' effort to provide for the family. Susana advised against the overconsumption of street food because it pushed the children away from home, "One gets their children so used to eating on the street that afterwards you make them food in the house and they do not want it." The discourse favoring comida casera was not unique to a specific age, time of migration, or a subgroup of Latinos. This discourse shaped these Latinos' common eating practices, but simultaneously reinforced the representation of women's work and family members' commitment to the family. Although parents in this study shunned street food, they still ate at restaurants or enjoyed a street cart delight. Even those with the most stringent dietary practices allowed themselves and their family opportunities to eat for pleasure. ADM: So, do you think that people have to change their diets completely? Lorena: It is not so much that I have changed my diet completely, nor do I want to change the diet of others, but there is a need for balance, like I mentioned … Me during the weekends, I allow myself everything. I think that there is a need for balance-to have a moderation. Imaginary naturalness-Latina/o immigrants in this study not only consumed food prepared at home, but also food that was free of any additives, nutrient enrichments, preserved in cans, packages, or frozen. Foods that were sold in these conditions were considered "processed" and "unnatural." For this reason, participants believed that they ate better in Latin America because the food was "natural," and "tasted" better. In particular, they believed that the dairy, meat, eggs, and produce from their country were neither produced with chemical enhancers or hormones, nor chemically preserved. Participants from rural communities described produce in Latin America as unaltered and locally grown. They perceived food as natural since they could gather fresh fruit, vegetables, or herbs from their garden. As Lorena said, if someone wanted to eat fruit in Michoacán, all they had to do was " … stretch out their hand." Local markets in Latin America were described as selling produce with dirt, not adorned in cellophane. Selena recalls the meat from her pueblo in Tabasco, México being fresher than in San Francisco: No, it [meat] is fresh because over there one goes to the market and they are already cutting the cow in quarters and they are selling it there, no? … It is fresh. They kill it in the night and the next day they are selling [it] … And, my father, for example, he would kill pigs, and at dawn he is killing it, and he is selling it at six, seven in the morning. It is what people will be eating at midday. This representation of Latin American food as natural and pure is the discourse of imaginary naturalness. "Imaginary" was not chosen to undermine the informants' memories of food produced in Latin America. Rural Latin Americans' representations of natural food are constructed from memories of dirt on produce and animal butchery, which is closer to the reality of farm life than a stroll down the supermarket aisle. However, with global advances in food production and nutrition , food systems in Latin America were more modern than the participants realized. This group of Latino immigrants in San Francisco has constructed the discourse of imaginary naturalness to justify their claims that they ate better in Latin America and to elevate food in Latin America. Although there was often food insecurity and monotony in their diets, at least the food in Latin America was free of artificial alteration. Moreover, participants construct positive discourses about food in Latin America to deal with their inability to enjoy food from their sender communities. Meat, eggs, dairy, and produce in San Francisco just did not taste "right" to Latino immigrants. Their shared experiences of "tasting difference" can provide an example Latina/o immigrants from different countries constructing a reality about Latin American food and a sense of "belongingness" in San Francisco. As Bhabha asserts, constructing a new meaning of diaspora pushes migrants from solely identifying vis-à-vis their nation, but also through an ethnicity. U.S. migration can produce similar turning points among this diverse group of immigrants, which facilitates the formation of a localized Latinidad through comiendo bien. Tasting similar foods distinctly creates a sensory community . By generalizing all U.S. foods as processed they reinforce the discourse of imaginary naturalness, which endorses Latin American food and promotes a critical perspective on U.S. food. Although Latino immigrants agree on the distinct taste and poor quality of food in the United States, one discourse that shapes this group's performance of Latinidad is actually about difference. María found the flavor of cumin to be so different from the one she consumed in Honduras, that her family sends her cumin. She felt that her family could not enjoy their meals without this distinct Honduran cumin. María: Here, they [Latinos] call it cumin, us, we call it "especia" in Honduras, but here they call it cumin. It is not the same, it tastes different, the cumin from here in comparison from over there. The annatto seed, too … now, these things are more Mexican … So, it is better that I entrust someone to bring it to me from over there. Not only is the flavor of the cumin different for María, but Hondurans also call it by another name. She is attributing the cumin's distinct flavor to the fact that the ingredient was imported from Mexico. This is one way that Latinos distinguish each other-through the foods that they consider unique to their region or country. Denise told me that the national dish of Nicaragua is gallo pinto. However, gallo pinto's one pot black beans and rice is similar to Cuban congrí, Honduran casamiento, among others. Distinguishing national dishes, foods, and spices by different names to represent different nationalities is an example of Hall's "doubleness of similarity and difference" where people's national history and culture differ and are at the same time similar depending on the point of reference for the observer. In the case of same difference, the taste and the origin of the ingredient matter in distinguishing Latinos culturally and geographically. The very act of distinguishing foods and re-signifying them this way is a way to acknowledge Latino immigrants' particularities. How they differentiate each other by food and flavor is similar among these immigrants. Although Latinos create opportunities for collective identity, they also produce instances of difference in order to transgress negative effects of exclusion and the ethnic homogenization by non-Latinos. Despite differences, Latino immigrants in San Francisco collectively construct Latinidad, particularly, if we consider families where the parents were from two Latin American countries. Among five participating families, the wife imparted and their partner engaged comiendo bien without finding the practice foreign. For example, Veronica from El Salvador, prepares foods she grew up with: a meat dish, rice, beans, and salad. Although her husband, a Mexican, did not grow up eating much rice or salad Veronica's meals share the structure of the platotóte he is familiar with. He is supportive of Veronica's way of imparting comiendo bien to their daughters by not discouraging them from eating Veronica's meals. Veronica is assuming a responsibility her husband saw women in his family do. Scenarios at the dinner table between the wife, husband/partner and children were similar across families with parents coming from different Latin American countries. However, when I asked participants with partners from the same country whether they thought all Latinos practiced comiendo bien similarly, some responded as Rosa did: "No, I don't think they do … because we all have our own way of being." These cooks were often taking into consideration others' cooking techniques and beliefs about which foods were nutritious. Yet, these diverse families are consciously using comiendo bien to reduce the use of medical services, and discursively to reproduce gender, parenthood, family authority, eating, and food practices that they believe distinguish them from others in San Francisco. The embodiment of comiendo bien-The embodied accomplishment of comiendo bien is important to demonstrate how Latinidad is recreated through normative embodied acts such as feeling full. Feeling full is not limited to the feeling in one's stomach, but more importantly, is visual. Visualizing the meal and assessing how much is consumed from the platotóte are the first acts that Latinos do at the table. Comiendo bien is verified by the amount of food consumed from someone's plate. The parents, particularly family cooks, used their eyes to assess everyone's plate. The parents' visual gauging of food on their children's and guests' plates superseded the individual's interpretation of fullness. If one did not consume most or all of the food served to them, then they did not demonstrate to the cook that they were full. Although Latino immigrant fathers are less responsible for visual gauging others' plates, they were instrumental in supporting their wife's petitions to eat, or gathering support from others to resist the introduction of new foods. For example, Rosa tried to create a "healthier" meal with a salad. Her husband openly asked their son, who was not eating the food on his plate, "Since when have we converted to vegetarians?" When they vacated the table, Rosa's husband offered to take their son out for a "real meal." In his mind, they were not satiated because they did not have tortillas or meat accompanying their salad. During our second interview, Rosa told me that she often prepared one meal for her husband and son, and another for her and her daughter. Rosa felt this obligation to ensure that her entire family reached the point where they felt full. Family members compliance to acts, such as eating everything on their platotóte, demonstrates how comiendo bien is a normative act. Duty to the family is a discourse where family members' actions are influenced by a commitment to the family's wellbeing. "Duty to the family" guarantees the financial and domestic contributions from every member towards the material and social survival of the family. Similar to familísmo , "duty to the family" marks events when the participants fulfill an unwritten obligation on behalf of their family. Unlike familísmo, which implies selflessness, the parents' manifestations of authority were also met with opposition, as in Rosa's example. "Duty to family" also informed adults' and their children's sense of responsibility to eat everything to avoid becoming ill, which could cause these working-class, immigrant parents to miss work, incur medical bills and other inconveniences. The pressure to "feel full" in the presence of others was not limited to parent-child interactions, but also among adults. Even when adults physically felt satiated, they often ate more if those eating with them communicated that they had not eaten enough. For example, Malena was told by her Guatemalan date that she was not eating enough because she only ordered two tacos. During my observations of these families in community settings, they had eaten more than they wanted when others told them that they were "trying to be delicate." The word "trying" implies that meager eaters are attempting to be refined. These are examples of presentation of self, and more specifically "impression management" because eating everything presents to the community that one is performing the role of a working-class, Latino immigrant. The representation of "feeling full" and "visual gauging" are important both in the reproduction of comiendo bien and the performance of Latinidad in San Francisco. Comiendo bien is informed by discourses constructed by Latino immigrants in their sender countries and in San Francisco . The collective activity involved in reproducing comiendo bien is both shaped by previous and current structural positions, normative discourses, and is constitutive of multiple identity positions. Latina immigrant mothers typically reproduce and lead the performance of comiendo bien. Although less visible, cohabitants, male partners and children are also contributing to the reproduction of comiendo bien by providing the money, planning the menu, or fulfilling their duty to the family by eating everything served on their platotóteconforming to and reproducing comiendo bien. The actions may be reified, but certainly not immutable. The conceptual elements that construct comiendo bien-structural context, discourses, and embodiment-are not mutually exclusive but relational. --- COMIENDO BIEN AS A PERFORMANCE OF LATINIDAD The goal of this study was to provide a processual description of comiendo bien among diverse Latino immigrant families in San Francisco in order to demonstrate how interactionist approaches to performance can be fruitful in examining the construction, negotiation, and representation of Latinidad. I commenced this paper introducing a deep debate in Latina/o Studies about the utility of Latina/o panethnic labels. Unlike some, I do not believe that the panethnic "Latina/o" label is merely a construct imposed onto a collective by U.S. private and public institutions. Although "Hispanic" and "Latino" have origins in colonization and are perpetuated by transnational institutions' attempts to distinguish this diverse group as the Other, Latina/o immigrants and their children transform these labels to enact Latinidad in their everyday activities in ethnic and immigrant enclaves -beyond political organizing and underground artistic expression. These Latino immigrants shared many experiences that unite them, such as their migration trajectories, experiences of marginalization, and material conditions in San Francisco. But these experiences are not a set of attributes that define all Latinos. For example, the perspectives of elite Latin Americans may not reflect these experiences. Rather, this representation of Latinidad through comiendo bien reflects the actions of primarily workingclass, undocumented immigrants in San Francisco. Their representation of Latinidad is amplified as a result of often living, working and obtaining community-based social services together in that city. They collectively create those actions that constitute Latinidad through practices like comiendo bien. Symbolic interactionists emphasize the importance of reflexivity, which is diluted in the poststructuralist subject often utilized to examine Latina/o identity formation. Reflexivity is very important if distinct Latin Americans re-interpret and perform Latinidad. The act of comiendo bien is further implicated by symbolic and cultural representations of the self; whether these positions come from social structures such as government agencies, class hierarchies or situational encounters , they still involve a reflexive process where Latinos inscribe symbolic meanings onto the body with food, or onto the food itself. Moreover, this examination of comiendo bien represents sociology's interest to "garner a greater sense of how symbolic interaction is part and parcel of broader sociological thinking of race" . Although Strauss did not write his theory of action specifically to examine race and ethnicity, his discussion of reflexivity and his expansion of Goffman's performance and presentation are of immense utility in examining racial formation and panethnic consciousness. Strauss emphasizes that we must examine actions, performances and representations through process and structural conditions. Representations like Latina/o can be bestowed upon others, but actors transform this status and contest its symbolic meanings through performance and by establishing the authorized agents. Sociologists need to be reminded that symbolic interaction can be used to analyze ethnic identity creation and transformation in new contexts and beyond Latinas/os to multiple diasporas. As interactionist performance demonstrates, comiendo bien moves beyond the food, or the act of eating, to a cultural construct that is reproducing other structural positions. This health practice facilitates the enactments of gender, parenthood, care-giver, nationality, family, and other identity positions. Comiendo bien is not solely a lay health practice, but rather a performance, since family members must engage in one or more activities to reproduce comiendo bien in San Francisco. Finally, I do not negate the multiple racial, ethnic, class, linguistic and political heterogeneities among Latino immigrants and U.S. Latinos living in the United States or abroad. However, further research should examine when these differences matter in Latinos' life chances and the actions they take to fuse or transform multiple shared or contested identity positions. --- Year of Migration --- Age at Migration --- Age at
Utilizing a bricolage of interactionist cultural studies, ethnic foodways, and situational analysis this paper examines how Latino immigrants, representing six countries and multiple preimmigration class positions, come to perform Latinidad through the lay health practice of comiendo bien (eating well). Comiendo bien was examined through participant observation of 15 families living in San Francisco and 27 key informant interviews. Comiendo bien is a performance that exists through the convergence of multiple identity positions. Latina/o immigrants not only enact the Latinidad in the United States through artistic expression or political strategizing, but also by sharing an idealized practice of healthy eating.
Introduction In recent years, social media networks, vital platforms for sharing contents with others in the era of Web 2.0, such as YouTube, Facebook, Delicious, Amazon, Flickr and Wikipedia, to name just a few, have experienced explosive growth [1,2]. These systems record the fingerprints of every user's activity and every item's popularity, providing ''a wealth of data'' to study the dynamics of human activity and item popularity at the global system scale. In particular, it is found that the probability distributions of the activity degree of users, e.g., editing in Wikipedia [3], voting in News2 [3] as well as favorite marking in Flickr [4], and the popularity degree of items, e.g., the number of fans a photo has in Flickr [4], follow a power law. The power law distributions are explained by the rich-get-richer mechanism [5,6], which is also called preferential attachment in the field of complex networks [7][8][9]. However, how these two distributions arise simultaneously due to human activity has yet to be determined. The activity dynamics [3,[10][11][12][13][14] and popularity dynamics [15][16][17][18][19][20][21][22][23] have been investigated in the literatures, respectively. However, human activity and item popularity, two perspectives of the cross links between users and items, are interdependent; therefore, we can not study the dynamics of one aspect alone. In addition, individuals are always embedded in a social network. It is widely believed that information can spread quickly along social links using user-to-user exchanges, also known as ''word-ofmouth'' exchanges; moreover, the users' behaviors are strongly influenced by their neighbors [23][24][25][26][27]. In particular, the social degree and the activity degree depend on each other [3]. Hence, it is considered worthwhile studying social networks to obtain deeper insights into the dynamics of human activity and item popularity. Until now, there has been no clear picture as to how online human activity and item popularity coevolve, so it is crucial to investigate the evolution of empirical human activity and item popularity as well as the theoretical model to obtain a better understanding of the possible generic laws governing the formation of activity distribution and popularity distribution. In this paper, we first characterize the evolution of human activity and item popularity in the Amazon, Flickr, Delicious and Wikipedia networks. It is found that in such social media networks, both relative probabilities of users creating cross links and items acquiring cross links are proportional to the degree of activity and degree of popularity, respectively. In particular, the inactive users are more likely to trace popular items than the active users. Based on empirical observations, we then propose an evolving model based on two-step random walk. Finally, we justify the validity of our model by comparing the results of model with that of empirical networks. This work could shed light on the understanding of evolution of user activity and item popularity in social media networks, and it also could be helpful in certain applications, such as designing efficient strategies for virtual marketing and network marketing, etc. --- Materials and Methods --- Data description and notations The Delicious data set was downloaded from http://data.dailabor.de/corpus/delicious/, and consists of 132,500,391 bookmarks, 50,221,626 URLs , and 947,835 users between September, 2003 and December 31, 2007 [28]. The Amazon usermovie rating data set was obtained from Stanford Large Network Dataset Collection [29]. The data consists of 7,911,684 ratings, 267,320 movies and 759,899 users between August 1997 and October 2012. The Flickr data set was collected by daily crawling Flickr over 2.5 million users from Nov 2, 2006 to Dec 3, 2006, and again daily from February 3, 2007 to May 18, 2007 [4]. Here, we only considered the users who had at least one favorite photo. With this constraint, there are 497,937 users, 11,232,836 photos and 34,734,221 favoritemarkings in the data. The Wikipedia data set was download from http://konect.uni-koblenz.de/networks/editenwiki. The data set consists of 21,416,395 articles written collaboratively by 3,819,691 volunteers around the world before September, 2010. The four datasets consist of individuals and items, such as movies in Amazon, URLs in Delicious, photos in Flickr, and articles in Wikipedia. Moreover, users are able to show interest in these items using the network feature of rating in Amazon, bookmarking in Delicious, favorite-marking in Flickr, and editing in Wikipedia. Therefore, these systems are topologically equivalent. For analysis purposes, the user-item data can be mapped into a two-layer network, as shown schematically in Fig. 1. This network has two types of nodes: M users and N items totally. In principle, the individuals are embedded in a social network. For example, Flickr and Delicious allow users to make friends. Therefore, there should be two types of links: the cross links between users and items as well as the social links among users. Mathematically, the topology shown in Fig. 1 can be characterized by two matrices. S, an M|M adjacency matrix, represents the social links among users, with element S ij ~1 if user i declares user j as his friend, otherwise S ij ~0. Similarly, C, an M|N adjacency matrix, characterizes the cross links, with element C il ~1 if user i is interested in the item l, otherwise C il ~0. To be specific, we defined the following types of degrees to characterize the multi-relational connections. Two degrees are related to the cross links: the activity degree: k a ~P l C il , i.e., the number of items interested by user i; the popularity degree k p ~P i C il , i.e., the number of users who are interested in the item l, which reasonably represents the popular extent in the network; and the social degree k s ~Pj S ij , i.e., the number of friends for a given user. Note, k a and k p are two different perspectives of the cross links connecting users and items. --- Measuring preferential attachment Here, we explain the method for measuring the phenomenon of preferential attachment on temporal data [30,31]. The basic idea is to investigate whether new links are likely to attach to nodes with larger degree . We calculate the empirical value of the relative probability P that a new cross link formed within a short period Dt connects to a user , which has a degree of k T at the time t 0 , as follows, P~A C P k 0 T A C :ð1Þ Here, k T is the degree at time t 0 . A~P kT ~k i,l C il is the number of nodes with exact degree k T at t 0 , but creating new cross links within next small interval t . C is the number of users with degree k T at t 0 . The preferential attachment hypothesis states that the rate P with which a node with k T links acquires new links is a monotonically increasing function of k T [32], namely P*k a T . To obtain a smooth curve from noisy data, we take the cumulative function form instead of P: k k T ð Þ~ð k 0 Pdk 0 T *k az1 T :ð2Þ In our measurement, k T can be either degree of activity k a or degree of popularity k p . This method has been successfully used to verify the preferential attachment mechanism of BA model [32] in empirical evolving networks [30,31,33,34] and theoretical models [35]. --- Measuring relative contributions ratio To measure the relative contribution ratio within a small interval Dt , we extend the method proposed in the reference [33] as follows. Absolute contribution from the users with degree k a is measured simply by a percentage of new cross links created by these users within a short period ½t 0 ,t 0 zDt out of the total number of cross links at time t 0 , r ka ~Pkp H ka kp P kp H kp ,ð3Þ where H ka kp ~Pk i ~ka k l ~kp C il ~Aka is the number of new links, which are created by the users with degree k a and attached to the items with degree k p , within the period t . H kp ~Pk l ~kp l k l ~Ck p is the number of cross links attached to the items with degree k p at time t 0 . In order to observe the differences of users' activity with different degree k a , we Figure 1. Schematic plot of the social media networks. For these two types of links, we define three types of degrees. For example, U4 in the network has social degree , and the activity degree ; I4 has the popularity degree . Please note that there is no social links in some cases, such as Wikipedia. doi:10.1371/journal.pone.0089192.g001 ∆ ∆ present a more detailed breakdown of this absolute contribution by calculating the percentage of new cross links, which are from the users with degree k a and attach to the items with degree k p , out of all links attached to these items at time t 0 , and then normalized by the absolute contribution of these users, namely relative contribution ratio, R ka ~H ka kp H kp 1 r ka :ð4Þ In a sense, it describes how often the users with degree k a are pursuing popular items. In principle, the Eq. is related to the Eq. for the users with degree k a as follows P ka * A ka C ~rka k p R ka :ð5Þ Results --- Empirical analysis to temporal data As shown in Fig. 1, Amazon, Flickr, Delicious and Wikipedia are typical social media networks consisting of users and items such as movies, photos, books, articles, etc . Social media networks are more complicated than the networks with one type of links in previously studies [7][8][9], including single node networks and bipartite networks, due to their multiplex nodes and multirelations. Basic statistical properties for each data set are shown in Table 1. The degree of activity and degree of popularity follow an approximately power law distribution [4,28,29]. In particular, the social degree follows a power law distribution in Flickr [4]. In the following, we report the main findings of our empirical analysis of the Amazon, Flickr, Delicious and Wikipedia networks. We pay particular attention to the evolution of activity degree and popularity degree in these four networks. Like many other complex networks, the growths of these four networks involve two major factors: adding new nodes and generating new links. Here we pay particular attention to the formation of new links during the evolution of networks, because this is the central process in which users can exchange information with each other. In the following, we focus on how the existing states of users and items affect the formation of new links and what encompasses the differences between various users' interests. First, we examine the phenomenon of preferential creation on the existing users and preferential attachment on the existing items in these four data sets. To this end, we employ a numerical method, proposed to test preferential attachment , to investigate how the generation of new cross links depends on the existing degrees in the temporal data sets. Figure 2 shows the cumulative function k with respect to the degree of activity and degree of popularity. We see that the relative cumulative probability k ) for users to create cross links is proportional to the existing degree of activity . In particular, the cumulative functions k approximately follow a straight line on the log-log scale, indicating that the relative cumulative probability of generating new degrees satisfies a power law with respect to the existing degrees, which can be characterized by the positive exponent a where k*x az1 with x denoting the degree. In Table 2, we list the characteristic exponents a a and a p determined by least-square fitting the k functions for small k as the curves deviate from the straight line for large k due to low statistics. The positive exponents a a and a p indicate that the active users have Exponents a a and a p as in k*x az1 , which characterize the influence of current degree of activity and degree of popularity on the formation of cross links between existing users and existing items as well as the formation of cross links between existing users and new items [in the brackets] The results are averaged over 10 randomly selected snapshots, where the exponents are determined by least-square fitting, and R 2 w0:99 generally. doi:10.1371/journal.pone.0089192.t002 greater chance to create new cross links than the inactive users , while the popular items have greater chance to attract new cross links. As these four systems expand rapidly, we then investigate the formation of cross links between new users and existing items . In the insets of Fig. 2,k characterizes the relative probability that the existing users are interested in new items with respect to the users' degree of activity, whereas k characterizes the relative probability that the existing items attract the attentions of new users with respect to the items' degree of popularity. Interestingly, as seen in the insets of Fig. 2, these cumulative functions also follow a power law. The positive exponents a a and a p indicate that the newly created items are more likely to attract the attentions of active users, while the new users are more likely to be interested in popular items. The above results suggest that the users are likely to trace popular items overall, and that the active users are more likely to create new cross links than the inactive users. What is the influence of activity degree on the intensity of users tracing popular items ? To attack this problem, we classify the users and items into different groups according to their activity degree and popularity degree. Then, we investigate the cumulative functions of relative probability k and k for different group of users and items, respectively. As seen from Fig. 3, the slops of inactive users tracking items look qualitatively larger than those of active users. For instance, in Wikipedia, the slope is 2.2 for k a ƒ10, while it is 1.75 for k a w10000. This indicates that the inactive users more severely trace popular items than the active users. Moreover, as seen in the insets of Fig. 3, the slops of unpopular items attracting users look slightly larger than those of popular items, indicating that the unpopular items attract a greater interest amongst active users. Please note that the differences between different groups of users or items are smaller for Amazon than for the other three networks. This may be due to the different spreading modes of items such as movies. For instance, a popular movie is similar to the well-known global information in the Amazon user-movie network, but there is no such counterpart in the Flickr user-photo, Delicious user-book and Wikipedia author-article networks. To provide an additional evidence for the different intensity of users tracing popular items, we also calculate the relative contribution R ka of users with activity degree k a , who create some new cross links to items with popularity degree k p within one day . Ideally, if the intensities of users tracing popular items are identical, the relative contribution ratios R should be always equal to 1 for all group of users. As seen in Fig. 4, the relative contribution of active users to unpopular items is larger than 1 but is smaller than 1 for popular items , indicating that the active users make higher contributions to unpopular items than average but lower to popular items than average. Meanwhile, the inactive users exhibit the opposite behavior with the exception of Amazon. Especially in Flickr and Wikipedia, it is obviously found that R increases for the most inactive users, while R decreases for the most active users with respect to popularity degree. Based on Eq. , the cumulative function k for the inactive users will increase more faster than that for the active users, indicating that the slop for inactive users is larger than that for active users . Furthermore, it is found that medium active users within Wikipedia, e.g., 1000vk a ƒ10000, make almost equivalent contributions to articles having different degree of popularity ), indicating that they may not care about the article's popularity when they edit them. These results also indicate that the inactive users are more likely to trace popular items than the active users, in agreement with previous observations. --- Modeling To further understand the mechanisms governing the evolution of real networks, we attempt to set up a theoretical model for useritem networks. Our primary goal is to qualitatively reproduce the human activity and the item popularity observed in the four empirical networks previously mentioned. In the above numerical analysis, the rich-get-richer phenomenon has been observed in the growth of the user's degree of activity and the item's degree of popularity, i.e., the active users have a higher probability of creating new cross links.The mechanism of preferential attachment has successfully explained the rich-getricher phenomenon in previous works [7][8][9], but it implicitly requires global information, e.g. degree of all nodes. However, it is impossible for individuals to collect global information in real social systems. Therefore, this only gives a macroscopic explanation of how a user's degree of activity and an item's degree of popularity evolve. Moreover, the formation of cross links will simultaneously affect the activity degree and popularity degree. This poses an interesting question: What is the microscopic mechanism governing the growth of a user's activity degree and an item's popularity degree while giving rise to the various distribution observed? There are two crucial questions to be considered. First, how are the users activated to create new cross links? It is very difficult to formulate the users' behaviors because human dynamics are very complicated due to the inherent diversity of real world circumstances. In the empirical analysis, the users with a larger degree of activity are more likely to create cross links. Moreover, it is found that the degree of activity is positively correlated to the social degrees [3]. In addition, the users' activities are influenced by their neighbors' activities as the information can spread along social links by user-to-user exchanges [23][24][25][26][27]. Therefore, we believe that the users with more friends are frequently activated as receiving more information from neighbors, and the users interested in more items are easily activated because they are very sensitive to stimuli. Hence, we employ the random walk, starting from one user and via either social or cross links, to select users, who will actively create cross links. The users with more friends and more items have a greater chance of being reached by random walk. It is found that random walk might be one possible micro mechanism governing the evolution of social networks [34,35], and is equivalent to preferential attachment from a macro perspective [35,36]. The second question to consider is: How do the activated users access the items? In Flickr, it has been found that over 80% of new social links are formed between friends' friends and over 50% of new cross links are formed between one user and his friends' favorite photos [4]. Moreover, the probability of a user favoritemarking one photo increases with the number of his friends who have favorite-marked the photo [4], indicating that the user is influenced by his friends and reaches the photo via his friends. We therefore assume that the users access the items via their friends by two-step random walk process. It is also worth noting that the popular items are exposed to more users, so they have a higher probability of being reached by the random walk process than the unpopular items. For simplicity, we made the following assumptions in our model: the users can befriend other users , the activated users are selected by random walk either via social or cross links, and new links are formed between one user and one of his second neighbors . In this way, the link growth process can be understand as two-step random walks via the social links or via the cross links. One way to model this network is to select the activated users who will then actively create new links. Another is to select the target nodes that will passively acquire new links. In our numerical simulation, we employ a two-step random walk for simplicity. Numerically, the topology evolves according to the following rules: the initial network consists of a few users and items . The users form a small random social network, while the items are randomly rated by the users. At each time step, one new user is added into the system and randomly connected to one user and one of items rated by the user that is being connected to. Meanwhile, q new items are added into the system, each of which is rated by one activated user selected by two-step random walk. At each time step, m users are activated by using a two-step random walk, and each of them connects to his second neighbors by a two-step random walk via common friends or via common items if they are not previously connected. At each time step, n users are activated by a two-step random walk, and each of them connects to one of items rated by his friends by a two-step random walk if he has not previously rated it. We carried out numerical simulations to validate the model. We set the parameters as follows: M 0 ~100 and N 0 ~100. We then ran the simulation up to M~100,000. Based on the simple assumptions of random walk, the model can reproduce the distributions of activity degree p and popularity degree p observed in the above four empirical networks. In Fig. 5, we compare the degree distributions of the model with those of the empirical networks. It is found that the distributions of the model networks are qualitatively consistent with their counterparts of the empirical networks. Though the distributions of popularity degree in the model do not quantitatively match those of empirical networks as shown in Figs. 5 and , the slops are consistent with each other. In the insets of Figs. 5 and , we compare the distributions of larger degree of popularity of the model with those of the empirical networks. It is observed that they are approximately consistent with each other. These results indicate that our assumptions are reasonable that the users are activated by a twostep random walk, and subsequently find items of interest to them in the same manner. Figure 6 displays the influences of the parameters on the distributions. From Fig. 6 , we can see that the ratio between the number of new cross links n and the number of new items q has an obvious influence on the distribution of popularity degree; however, the distributions of activity degree are greatly affected by the parameter n as seen in Fig. 6 . Furthermore, the distributions of activity degree depend on the number of new social links m to some extent, while the distributions of social degree p are almost independent of the number of new cross links n and the number of new items q. In particular, the distributions of social degree follow a power law, which is qualitatively consistent with that of Flickr networks. --- Discussion In this study, we first carried out an empirical analysis to four empirical networks: Amazon, Flickr, Delicious and Wikipedia. Our study revealed the growth patterns of the users' degrees of activity and items' degrees of popularity within these networks, both of which follow the law of the rich-get-richer. It was found that the users are likely to trace popular items, but the intensities are different for the users with different activity degrees. For example, the active users make a greater than average contributions to the unpopular items whereas the inactive users make a greater than average contributions to the popular items. Motivated by the empirical findings in these four networks, we proposed an evolving model based on a two-step random walk, which is able to qualitatively reproduce the activity and popularity distributions observed in empirical networks. Based on both the empirical analysis and the theoretical model, we believe that the information spreading amongst individuals, which is simplified as a two-step random walk in the model, could represent one possible micro mechanism governing the dynamic evolution of human activity and item popularity. Of course, the dynamics of human activity and item popularity are very complicated due to the inherent diversity of human behaviors and the varying nature of items. Hence, there may be other microscopic mechanisms governing the dynamics of human activity and item popularity. It should be noted that the results of our model are only qualitatively consistent with the empirical results. The quantitative mismatch is due to the simplifications in our model. For example, the users are only activated by a two-step random walk, and then reach the items by another two-step random walk via friends. In reality, the situation could be much more complicated. In the empirical networks, for example, besides the stimulus of neighbors, the occasional events can inspire users to participate in networkrelating events. For instance, the users can access photos through various other channels in Flickr, such as the list of interesting photos provided by the web site, the search engine, the links between similar photos and so on. Furthermore, an item's particular attributes, such as being an award-winning picture, may disproportionally affect how quickly an item's popularity changes. These factors have remarkable influence on the growth of human activity and item popularity. We believe that if we consider more realistic factors in the model, we can improve the performance of our model and obtain more helpful insights in understanding the dynamics of human activity and item popularity. These problems deserve further investigations in the future. ---
Social media, regarded as two-layer networks consisting of users and items, turn out to be the most important channels for access to massive information in the era of Web 2.0. The dynamics of human activity and item popularity is a crucial issue in social media networks. In this paper, by analyzing the growth of user activity and item popularity in four empirical social media networks, i.e., Amazon, Flickr, Delicious and Wikipedia, it is found that cross links between users and items are more likely to be created by active users and to be acquired by popular items, where user activity and item popularity are measured by the number of cross links associated with users and items. This indicates that users generally trace popular items, overall. However, it is found that the inactive users more severely trace popular items than the active users. Inspired by empirical analysis, we propose an evolving model for such networks, in which the evolution is driven only by two-step random walk. Numerical experiments verified that the model can qualitatively reproduce the distributions of user activity and item popularity observed in empirical networks. These results might shed light on the understandings of micro dynamics of activity and popularity in social media networks.
Background Cervical cancer is the fourth most common cancer in women worldwide, with an estimated 528,000 new cases and approximately 275,000 deaths reported annually [1]. Moreover, 85% of the cases and most of the deaths occur in developing countries [2]. Cervical cancer incidence rates in sub-Saharan Africa are the highest worldwide, and the disease is the most common cause of cancer death among women in this region [3,4]. In Kenya, cervical cancer is the most prevalent cancer among women aged 15-44 years, with an estimated 4802 women diagnosed and 2451 deaths from the disease annually [5]. These elevated incidence and mortality rates can be attributed to the absence of the HPV vaccine and the low screening coverage [6]. Nearly all cervical cancer cases are caused by infection with high-risk types of human papillomavirus . Approximately 15 HPV types are associated with an increased risk of the disease; among the oncogenic HPV types, HPV16 and HPV18 are the most dangerous [7]. The implementation of an HPV vaccine program to prevent cervical cancer is one approach. However, to effectively see reduction rates in the incidence of cervical cancer, researchers and health professionals also recommend a cervical cancer screening program. Screening for cervical cancer is essential because vaccines do not treat existing HPV infections. Currently, a large proportion of women in low and middle income countries do not benefit from the HPV vaccine program. These women were either beyond the recommended age for the vaccines and/or already exposed to HPV [8]. Screening programs can save the lives of millions of women who develop precancerous lesions. For the early detection of cervical cancer and its precursor lesions, several screening modalities are now available, such as cytology or Papanicolaou testing, visual inspection using acetic acid or Lugol's iodine , and HPV-test. The Pap test is a simple, safe, noninvasive, and effective method for detecting precancerous, cancerous, and noncancerous changes in the cervix and vagina [9]. Although the Pap test is effective, sustaining highquality cytology-based programs is difficult in lowincome countries because of the complex process of collection, preparation, staining, reading, and reporting and the delay between screening and provision of test results [10]. Therefore, in low-resource areas, costeffective strategies that are inexpensive and of reliable quality are vital for preventing and intervening cervical cancer [11]. Common alternative screening tests are VIA and VILI. Although it has a lower specificity, VIA is still advocated as a screening method alternative to the Pap test in poorly resourced locations [12]. The attractive features of VIA and VILI include their low cost, simple administration, independence from laboratory services, and provision of real-time screening results, particularly in rural areas, where people travel for hours to visit a doctor. A screening method requiring fewer visits can largely increase acceptance and participation rates [11]. Thus, in low-income areas, particularly rural areas, VIA as a visual screening test is a promising alternative to the Pap test for the early detection of cervical cancer [13]. Cervical cancer screening programs have been available in Kenya, as a part of the Ministry of Health's National Cervical Cancer Prevention Strategic Plan from 2002 to 2006. This program was implemented with the objective of increasing the use of the Pap test, VIA, and VILI among women [14]. Approximately 86% of women in Kenya have never been screened [15]. HPV testing is also feasible in low-resource settings. It is cost-effective and is well suited to address some of the barriers to implementing adequate screening programs in low resource settings [16]. Even though studies suggested that sampling by a clinician should be the recommended method, HPV testing through the self-sampling method may be an acceptable option to reach women who do not or are not able to participate in the regular screening program [17,18]. Therefore considering the lack of human resources, poor infrastructure, cost, long hospital queues and lack of quality cytopathology as the major barriers to cervical cancer screening in most SSA countries, self-sampling for HPV DNA test is an appropriate modality that can largely increase the coverage of cervical cancer screening [19]. A few studies have investigated the possible reasons for the low participation rates of women in cervical cancer screening programs in SSA. Lack of knowledge and awareness of cervical cancer are cited as the most common barriers to cervical cancer screening programs in SSA [20]. Other barriers include lack of financial resources, long distance to health facility, and lengthy waiting times to get an appointment for a Pap test [21,22]. By contrast, high education level and white-collar occupation are positively associated with cervical cancer screening [23,24]. Education equips women to have better knowledge toward the disease and thus increases the acceptance of cancer screening [25]. In addition, health insurance coverage and access to information through education and media are strongly and positively associated with screening experiences [26][27][28]. Some other researchers have investigated the influence of women's decision-making autonomy on cervical cancer screening [29]. In most developing countries, gender norms and values continue to influence access to and utilization of sexual and reproductive health services [28,30]. Gender norms may affect women's mobility and decision-making power to access health care services. Women's empowerment within the context of their household and relations with their partner can play a powerful role in their utilization of reproductive health services [31]. At the community level, low autonomy of women can influence their cervical cancer screening through cultural beliefs and practices. Most cultures in SSA consider women leaving their homes to seek health care to be unacceptable [32], particularly in rural area, where women living in communities are expected to not visit health care facilities alone; these women are less likely to use reproductive health care services [33]. By contrast, if the community norms support women's own decisionmaking in health care seeking, women are more likely to use various health care services [34]. Most previous studies in SSA on the determinants of cervical cancer screening did not focus on the community-level characteristics. This study fills this gap by including both community-level indicators and individual-level characteristics. The objective of our study is to examine the determinants of cervical cancer screening among Kenyan women. We hypothesized that women who have higher levels of socioeconomic status and autonomy at both the individual and community levels, have health insurance, and feel that distance to health facilities is not a major problem are more likely to use cervical cancer screening than were their counterparts. --- Methods --- Data This study used data from the most recent Kenya Demographic and Health Surveys , conducted in 2014. The KDHS is a nationally representative dataset collected by the National Statistical Bureau in Kenya. The 2014 KDHS was designed to produce representative estimates for most of the survey indicators at the national level. A two-stage sampling design was applied that involved randomly selecting villages in the first stage followed by randomly selecting households in the second stage. Questionnaires were pretested to ensure that the questions were clear and could be understood by respondents. Our analysis focused on 9016 married women of reproductive age in 1588 clusters who were interviewed face to face about cervical cancer. --- Measures --- Outcome variables This study had two outcome variables: cervical cancer screening in general and the Pap test. Cervical cancer screening was measured in terms of whether respondents underwent any cervical cancer examination ever; respondents were specifically asked "Have you ever been tested or examined for cervical cancer?". Respondents who answered "Yes" were then asked "What type of exam did you test?" . --- Individual-level variables Individual-level variables included the women's age , religion , region , place of residence , education level , employment , number of living children , amount of media exposure , health insurance coverage , and whether the respondent visited a health facility in the last 12 months . The wealth index was a composite score measured by household assets such as televisions, bicycles, materials used for house construction, water access types, sanitation facilities, and other characteristics related to wealth. Factor scores of household assets were generated through a principal component analysis and were then standardized and categorized into five quintiles . We measured three aspects of women's autonomy: decision-making power in the household, sexual autonomy, and attitudes toward wife-beating at both individual and community levels. Decision-making power in the household was measured using the answers to the following five questions: the questions as to who decides matters pertaining to the woman's health , large household purchases , visits to friends or family , food to be cooked each day, and what to do with money the husband earns. Women who made all the aforementioned decisions, either alone or jointly with her husband, were categorized as having high decision-making autonomy, whereas the other women were categorized as having low decision-making autonomy. Sexual autonomy was measured according to the respondents' agreement with some reasons in which a woman is justified to refuse sex with her husband. Attitudes toward wife-beating or domestic violence was measured on the basis of the following five hypothetical scenarios: she goes out without telling him, she neglects the children, she argues with him, she refuses to have sexual intercourse with him, and she does not cook food properly. If a respondent agreed that her husband had a right to beat her in any of these five hypothetical scenarios, she was classified as having a favorable attitude toward domestic violence against women. However, if she did not agree with all of these hypothetical scenarios, she was classified as having an opposing attitude toward domestic violence against women. --- Community-level variables We included six community-level variables in our study, obtained by aggregating individual responses for each item to the community level. The six community-level variables were the proportions of women who had high decision-making autonomy, had sexual autonomy, had favorable attitudes toward wifebeating, received secondary and higher education, perceived the distance to a health facility as a major problem, and had a nonpoor wealth index. Each variable was categorized into low, middle, and high on the basis of tertiles. --- Statistical analyses We conducted series bivariate and multilevel analyses using SAS 9.4. We used the chi-squared test to examine the association of individual-and community-level characteristics with cervical cancer screening. We further conducted multilevel analyses using generalized linear mixed models with the log-binomial function to simultaneously analyze the relationships of individual-and community-level factors with the outcomes. Results of the multivariate relationships were expressed as Prevalence Ratio with 95% confidence intervals [35,36]. We first constructed a null model. We then included only the individual-level variables and then only community-level variables. Finally, we simultaneously included both individual-and communitylevel variables in the final model. We present only the final models. We also calculated intraclass correlation coefficients , which represent the proportion of variance at the group level divided by the sum of the variances at the individual and group levels, to determine how well we adjusted the dependency of outcomes within communities. We examined the model fit measured using the Akaike information criterion . A lower AIC value represents a better model fit. We examined multicollinearity problems in the regression models by estimating the variance inflation factor and tolerance. All tolerance values were >0.1 and all variance inflation factor values were <10. Therefore, no multicollinearity problems were observed in the regression models. --- Ethical considerations All data were obtained from the 2014 KDHS. Informed consent was obtained from each respondent before the interviews [12]. We obtained approval to use the data from the DHS repository . --- Results Approximately 28% of married Kenyan women had no previous knowledge of cervical cancer . Among the women who knew about cervical cancer , only 2 presents the results of the bivariate analysis of the individual-and community-level characteristics and cervical cancer screening. All individual-and community-level variables were significantly associated with any type of cervical cancer screening in the bivariate analysis, except for the numbers of living children, whether the woman visit a health facility in the last 12 months, and the proportion of women in communities with high decision-making autonomy. In addition, the outcome of having undergone the Pap test ever was significantly associated with most individual-level and all community-level variables. Among individual-level variables, women's religion, employment status, decisionmaking power at home, attitudes toward wife-beating, and whether the woman visited a health facility in the last 12 months were not significantly associated with a history of the Pap test. The results of the multilevel analyses are presented in Table 3. The results of the null model for any type of cervical cancer screening outcome, demonstrated a significant variance in cervical cancer screening behavior between communities. About 30 % of the total variance in the cervical cancer screening behavior was at the community level . The analysis of only individual-level variables, revealed that women's age, religion, region, education level, employment, amount of media exposure, household wealth index, visiting a health facility, and health insurance were significantly associated with use of any type of cervical cancer screening; the ICC indicated that 29% of the variation in cervical cancer screening was attributable to among community differences . In the final model , included both the individualand community-level characteristics. The results showed that the prevalence of any type of cervical cancer screening was 1.29 times higher among older women than among younger women . The prevalence was also higher among women residing in the Central, Nyanza, and Nairobi regions than among women residing in the Coastal region . Regarding employment, any type of cervical cancer screening was 1.21 times more prevalent among employed women when compared to unemployed women . Media exposure was also positively associated with any type of cervical cancer screening. The prevalence ratio for women who had exposure to three types of media was 1.36 compared to women who had no exposure to any media . The prevalence ratio for women from the richest households was 2.02 compared with women from the poorest households . Even after the inclusion of both individualand community-level variables, the variation in cervical cancer screening behavior between communities remained significant; as shown by the estimated ICC, 23% of the variability in any type of cervical cancer screening was attributable to community differences . The multilevel analyses of factors associated with the utilization of Pap test; the results for the null model indicated that 40% of the total variance in Pap test was accounted by between-community variations . The analysis of only individual-level variables revealed that the prevalence of Pap test was higher among the women who were older, resided in Central and Nairobi regions, were employed, had rich and the richest wealth index scores, had sexual autonomy, and had health insurance coverage than were their counterparts. The ICC indicated that 17% of the variation in the utilization of Pap test was attributable to community differences . The final model was presented in Table 3. After included both individual and community-level variables in the final model, age, residence in the Nairobi region, employment, wealth index, sexual autonomy, and health insurance coverage were significantly associated with the prevalence of Pap test history . The prevalence of Pap test history was higher among communities comprised of higher proportions of women with sexual autonomy and higher education than the counterparts. The estimated ICC indicated that 10% of the variability in Pap test history was attributable to community differences . --- Discussion Our study contributes to the understanding of factors associated with cervical cancer screening in Kenya, where the prevalence of this screening remains low [24]. To our knowledge, this is the first study to assess both the individual-and community-level factors associated with cervical cancer screening in Africa. Our findings reveal that a significant number of women who had knowledge of cervical cancer did not use screening services; in addition, approximately 28% of women in Kenya had no prior knowledge of cervical cancer. Lack of knowledge, younger age, lack of income, fear of the Pap test, and lack of access to screening services were significantly associated with low cervical cancer screening rates [37,38]. This suggests that cervical cancer screening programs can incorporate self-sampling HPV DNA tests. Recent studies have recommended that cervical cancer screening programs that incorporate selfsampling and HPV DNA tests are feasible, and may significantly improve uptake of cervical cancer screening in SSA [19]. Our study also showed that the prevalence of any type of cervical cancer screening was higher among those residing in the Central and Nyanza regions, while the prevalence of using a Pap test was higher in the Nairobi region. A possible explanation for the regional variation observed is that the Central, Nyanza, and Nairobi regions characteristically have higher socioeconomic status, less cultural conservatism, and easier access to health care services [39,40]. Corroborating the results of similar studies, our results demonstrate that women's employment and household wealth were positively associated with cervical cancer screening [27,41,42]. The lower prevalence of cervical cancer screening among unemployed and poorer women may indicate financial burden, which is a barrier to accessing cervical cancer screening services. Employed women were more likely to undergo cervical cancer screening because this group of women is most likely to own private health insurance [27]. Our study determined that both individual-and community-level women's sexual autonomy had a positive influence on Pap testing behavior, indicating that gender inequality, as assessed through low sexual autonomy, can affect cervical cancer screening. Studies have indicated that women's sexuality is much more controlled than men's in most developing countries, where women are perceived as passive and powerless and societies describe sex as primarily a male domain [43,44]. Furthermore, several myths and misconceptions related to women's sexual and reproductive health after undergoing screening have been widely accepted [45,46]; consequently, this can cause various health problems. Our results indicate that empowering women to control their own lives and make their own decisions regarding their sexual and reproductive health is necessary [47]. Women who resided in communities comprising a higher proportion of women with secondary and higher education were likely to have a history of the Pap test. This finding is consistent with those of previous study results, suggesting that a community with a high concentration of educated women can increase the utilization of health care services including cervical cancer screening [48,49]. Education is frequently associated with increased access to health care services and more knowledge regarding health behavior. Increasing the proportion of educated women may facilitate the dissemination of knowledge to those with lower education, aiding them in accessing health services through informal social networks and contacts. Contradicting with our hypothesis and previous study findings [27,50], we found a marginal positive association between the proportion of women that perceived distance to a health facility as a major problem and cervical cancer screening. The possible explanation for this unexpected result is that women who live in rural and/or remote areas have low expectations of health services, and thus judge the distance to a health facility as not a major problem. Other logistical barriers such as lack of transportation and lack of finance to access screening services are influential factors that can further influence screening behavior [21]. However, these variables are not available in our data set . Future research should further include these potential logistical factors associated with cervical cancer screening in the study design and analysis. As anticipated, health insurance coverage was strongly associated with both primary and secondary outcomes. Our finding regarding the association between health insurance and screening use is consistent with the results of previous studies [51,52]. Our study results prove that the adoption of a universal health insurance scheme ensuring equity in access to health care can largely enhance the possibility of cervical cancer screening use [27]. Cost is one of the main barriers to obtaining a cervical cancer screening among women in resource-constrained countries [21,50]. In a region where the poverty is high, emergency needs are given greater priority to out-of-pocket payments than preventive services [53]. Consequently, health insurance coverage may potentially reduce the financial burden for women to access preventive health care services, including cervical cancer screening. Consistent with other studies, our study suggested that visiting a health facility in the last 12 months is positively associated with cervical cancer screening behavior. Having a usual source of care is important for women's access to screening services [53,54]. Particularly in resource-poor settings, contact with health professional workers while visiting a health facility can increase women's exposure to related health knowledge and encourage women to undertake preventive services [55]. Prior studies also demonstrated that a health provider's recommendation was consistently found to be a strong predictor of completion of cervical cancer screening [56]. Our study has some potential limitations. First, the cross-sectional study design limited our ability to draw causal inferences for the association of individual-and community-level factors with cervical cancer screening. Second, because of the limited number of variables collected by the KDHS, we could not examine a full array of factors related to cervical cancer screening, particularly cultural and supply-side factors including health service quality and other factors related accessibility to the services. Third, our community measures were based on aggregating individual responses to the community level, which may increase the likelihood of misclassifying individuals into inappropriate administratively defined boundaries . --- Conclusion Our study determined that both individual-and community-level factors influence cervical cancer screening behavior. Specifically, geographical distribution of medical resources, exposure to health information through media, employment opportunities, health insurance coverage, and women's own sexual autonomy, as well as women's sexual autonomy and education at the community level, all contribute to their screening behavior. Our findings provide suggestions for future studies to address these factors associated with cervical cancer screening rates in Kenya. --- Implications for practice and/or policy Our results suggest that the adoption of policies promoting access to information about the benefit of cervical cancer screening through media and improve gender equality can empower women to use screening services. Employment programs should aim to provide employment opportunities among women. Establishing income-generating programs for women may increase their intention toward and actual use of cervical cancer screening. Moreover, the influence of extending insurance overage could be substantial. Health insurance coverage can potentially reduce out-of-pocket health expenses for women and empower them financially to demand and be able to use health services. Health policymakers should also address the issue of geographical inequalities in screening behavior; this can be achieved through approaches such as increasing health facility and medical personnel in rural areas to minimize geographical inequality. Public health programs must target young adults to inform them about the benefits of early detection of cervical cancer and motivate them to initiate preventive behavioral changes. In addition, to improve cervical cancer screening coverage and achieve optimal protection, HPV testing by using self-collected samples is a plausible modality for cervical cancer screening in future policy development. --- --- --- --- Competing interests The authors declare that they have no competing interests. ---
Background: Studies on the determinants of cervical cancer screening in sub-Saharan Africa have focused mostly on individual-level characteristics of cervical cancer screening. Therefore, in this study, we included both individual-and community-level indicators to examine the determinants of cervical cancer screening among Kenyan women. Methods: We analyzed data from the 2014 Kenya Demographic and Health Surveys. Our analysis focused on 9016 married women of reproductive age (15-49 years). We conducted multilevel analyses using generalized linear mixed models with the log-binomial function to simultaneously analyze the association of individual-and community-level factors with cervical cancer screening. Results: About 72.1% of women (n = 6498) knew about cervical cancer. Of these women, only 19.4% had undergone cervical cancer screening [58.24% Papanicolaou (Pap) test and 41.76% visual inspection]. Our multivariate analysis results indicated that the prevalence of cervical cancer screening was higher among women aged 35-49 years than women aged 15-24 years. The prevalence was also higher among women residing in the Central, Nyanza, and Nairobi regions than women residing in the Coastal region. Cervical cancer screening was more prevalent among women who had media exposure, had higher household wealth index, were employed, were insured, and had visit a health facility in 12 months than did their counterparts. The prevalence of Pap test history was 19% higher among women who had sexual autonomy than women who did not have sexual autonomy. The prevalence of Pap test history was also higher among communities comprised of higher proportions of women with sexual autonomy and higher education. Conclusions: Policies should emphasize increasing gender equality, improving education at the community level, providing employment opportunities for women, and increasing universal health insurance coverage. These focal points can ensure equity in access to health care services and further increase the prevalence of cervical cancer screening in Kenya.
Introduction LGBT is an acronym for "Lesbian, Gay, Bisexual, and Transgender." The American Psychiatric Association suggests that sexual orientation will continue to develop throughout a person's life; sexual orientation can be divided into three, based on sexual and emotional impulses or desires that are a romantic attraction to the same sex . LGBT is considered by society as a deviant act but in several countries, LGBT has been legalized in Europe, Netherlands, Germany, England, South Africa, Canada, and United States. Since the beginning of human history, there have been those who have crossed gender or have had erotic, romantic, and ritual relationships with other genders in society . On June 26, 2015, all LGBT people celebrated the decision of Obergefal V. Hodges, namely the legalization of same-sex marriage and rights and guarantees by the United States Supreme Court . Five years later, on June 15, 2020, the LGBT community praised the American Supreme Court for winning the LGBT people in a discrimination case at work . America's Supreme Court without good reason. Today, LGBT does not only present and voice itself in countries that have legalized LGBT but also in countries that have not legalized it, such as Indonesia. The sound and efforts of this propaganda can be seen from the reports in electronic and digital media. One of the pieces of news that emerged, for example, on September 29, 2020, the police raided Jakarta . The Central Java Regional Police raided a boarding house used as a gay plus-plus massage place in the Banjarsari area, Solo City, on Monday, September 27, 2021 . LGBT . This news is enough proof that LGBT is rife in Indonesia. In addition, some news about LGBT will also appear on the Google homepage when searching with the LGBT keyword. Existing readings and news, including online media, present more than just information. However, it has various purposes, such as changing Therefore, improving the quality of information by reading from accurate sources is important. In Islamic teachings, the phenomenon of LGBT is considered contradictory; one of the arguments used is through Q.S. Al-A'raf [7]: 80-84. In the Tafsir Al-Wasith, this verse is said to explain the arguments for their excessive attitude toward pleasure and actions that exceed the limits of conscience and reason. According to groups that reject LGBT actors, they do not consider the dangers of their actions to health and life, Achmad Zuhri, Laela Fitriyatul Khoeriyah, Nida Nur Hanifah such as deadly diseases, as indicated in various studies of people who have died due to HIV/AIDS . At present, the victims have reached more than one hundred thousand; at the end of the 20th century, it reached four million, and the right medicine for this virus has not been found . In the view of Christianity, the rejection of LGBT groups is explained in the third book of the Old Testament Bible , This argument explains that the Old Testament says that the punishment for LGBT people is death. The existence of LGBT in Indonesia also often receives a rejection from various lines of society, including the West Java Islamic Movement Alliance , which carried out a protest action in front of the West Java Provincial Parliament Building on Friday, December 29 2017 . The NahdlatulUlama Community Organization also rejects the existence of LGBT. The refusal was conveyed by of the NahdlatulUlama Executive Board , KH. Akhmad Said Asrori admits that he is concerned about Deddy Corbuzier's podcast showing gay couples, and he also emphasized that NU, from the top management to the rejection came from the Saiful Mujani Research And Consulting Institute survey, which showed that 68% of the Indonesian public objected to being neighbours with people with LGBT backgrounds . Rejection from various lines of society has not reduced the courage of LGBT people to speak out for themselves and seek rights that they feel have not been obtained in Indonesia, as evidenced by the several activities they have carried out. This is, for example, with the emergence of Pride Month activity, an annual activity carried out by the LGBT community in June. This activity can be evidenced as a Portrait of Freedom for the LGBT Community in Indonesia. Then the use of social media as a means to express himself with an LGBT background. Apart from social media, equality and the welfare of LGBT people. This struggle uses the pretext of equality, which means that individuals with other individuals have the same status in society. The desired equality is the absence of discrimination based on sex or sexual orientation in employment . Indonesia is GAYa Nusantara, the Indonesian LGBT community, which actively provides articles about LGBT on its website. Activities carried out by GAYa Nusantara on the internet can be categorized as propaganda in the mass media. Propaganda is message dissemination to audiences that have previously been planned to change the views, opinions, and behaviour of the audience or recipients of the message . According human action with representation ; the presentation can be in the form of writing, pictures, oral or music. Propaganda can be said as a special way or free step using deception in presenting messages to According to William E Daugherty and Morris Janowitz in A Psychological Warfare Casebook, there are three types of propaganda models: black propaganda, where propaganda is carried out covertly. Another type of propaganda is the second is white propaganda, where the propaganda is done openly, and the source is clear. The third type of propaganda is grey propaganda, whose source is unknown with certainty . Propaganda is currently very easy to carry out and be accepted by the public because of the sophistication of technology and the ease of internet access that presents mass media. The mass media is present as a Achmad Zuhri, Laela Fitriyatul Khoeriyah, Nida Nur Hanifah means of channelling information or messages to the public. The internet easily accesses today's mass media via smartphones. With this convenience, news or information is quickly conveyed to the public, and ironically, the public often needs to make sure the information is correct and carefully examined. News or information spread in the mass media does not rule out the possibility of propaganda content, like GAYa Nusantara, which includes propaganda content in the news, press releases, and articles on its website. In addition, GAYa Nusantara also includes propaganda content in its social media content, such as Instagram, Facebook and Twitter. It is hoped that these propaganda contents will change people's views or attitudes towards LGBT so that the mission of equality and LGBT welfare is achieved as expected by GAYa Nusantara. Departing from this phenomenon, this article attempts to answer how certain media carry out propaganda or their mission. Through news content analysis, this article analyzes news on the GAYa Nusantara website portal, which is media owned by non-governmental organizations or the LGBT community in Indonesia. Moreover, the NU Online news portal, owned by NahdlatulUlama' , the portal that has been preaching or rejecting the existence of LGBT in Indonesia. In line with this, several literature facts that align with this study have been carried out by several previous researchers. For example, studies on propaganda in the media examine political propaganda for presidential candidates. By using content analysis, he tries to see whether the political campaign carried out by the presidential candidate contains any propaganda and what is the purpose of the propaganda. In addition, Kurniasih discussed the propaganda content contained in DjawaBaroe magazine, which was carried out by the Japanese so that it could manipulate the Indonesian people . Hashina and Dwi Prianti explained that propaganda, doctrine and the application of Propaganda is often used to show an organization's existence and sometimes even to bring down rivals. The choice of the NU Online news portal is based on the fact that NU is the largest community organization in Indonesia, which of course, its views will have a wider impact. NU has always tended to provide a middle ground for social problems. The middle way in question still conveys the truth according to Islam but also pays approach regarding the four schools of thought, which is more contextual in judging a social phenomenon. NU also prioritizes the da'wah approach with compassion rather than using violence. This research is a library research study, namely conducting research with data from the literature in the form of library sources, articles, books, the internet, and community websites that support and are related to the issues raised. After the data is collected, analysis is carried out using content analysis techniques. is a method used in analyzing text. In this case, content analysis is a systematic technique for analyzing or observing the content of messages or the open communication behaviour of selected communicators. . Meanwhile, agenda-setting theory is operated in this article. Agendasetting theory is a derivative of mass communication theory. Maxwell McCombs and Donald Shaw originally formulated the agenda-setting theory in 1972. This theory explains that the media is the centre of truth enforcement, which can increase awareness and information on the public agenda. This theory also explains the relationship between emphasis on issues and the media audience's interest in ownership of issues. It aims to increase public awareness and draw attention to issues considered important by the media . In other words, Achmad Zuhri, Laela Fitriyatul Khoeriyah, Nida Nur Hanifah agenda-setting seeks to show important and salient issues and images in the people's minds . on several factors, such as the credibility of the media in a particular issue the degree of similarity between public values and media values; and How willing the public is to receive direction from the media. Agenda-setting theory is unique in that it supports two interesting basic assumptions. First, this theory clearly states that the mass media hand, this theory also supports the hypothesis that somehow everything returns to the individual, where they have the freedom to choose what they want to receive. The way agenda setting works is that the media agenda intervenes in the public agenda, and then the public agenda allows reported by the mass media will become public knowledge so that they are widely discussed and debated in public forums. This article also uses interview techniques to deepen the text analysis with the existing propaganda context. Interviews were conducted with PurbaWidnyana, one of the founders of the GAYa Nusantara Foundation, who currently serves as secretary and KendiSetiawanas Assistant Editor of NU Online. The object of research in this study is all news that contains elements of propaganda on the GAYa Nusantara and NU Online portals. The selection of GAYa Nusantara and NU Online was based on the consideration of the problems taken by the researchers, namely LGBT LGBT rights, while the NU Online portal focuses on voicing LGBT views and laws in the Islamic religion. The unit of analysis in this research is all LGBT, and activities held by the GAYa Nusantara organization. In this case, several things include the category of propaganda. First, the use of mockery names, namely giving an insulting name to an idea, belief, position, national or racial group, so the public rejects or criticizes it without checking the truth. Second, the use of grandiose words, namely, giving grandiose terms with the aim that people accept the truth without proof. Third, Diversion, one of the diversion tactics, is to use the authority that contains the value of honour and is transferred about something so that the audience accepts it. Fourth,quoting the words of famous people about whether an idea or carried out by covering up facts and presenting false evidence to deceive the public. Sixth, self-deprecation with propaganda techniques that are carried out to gain public sympathy by convincing someone with ideas to be good. Seventh, the hura-hura aspect is carried out by inviting the audience to agree on an idea andensuring that other people agree. --- Result and Discussion In an interview, Purba Widnyana stated that GAYa Nusantara is a social organization focusing on HIV health issues. This institution is the pioneer of gay organizations in Indonesia that are open and proud of their identity and do not question the diversity of sex, gender and sexuality . The choice of the name GAYa Nusantara with the writing style GAY written in upper case is a form of their courage in campaigning for LGBT behaviour. Purba also stated that Achmad Zuhri, Laela Fitriyatul Khoeriyah, Nida Nur Hanifah GAYa Nusantara upholds a sense of responsibility, honesty, punctuality, and a democratic attitude are values that live in GAYA Nusantara. In addition, the information and cultural development atmosphere encourages and creates intimacy, friendship, and romance . According to Purba, not all GAYa Nusantara staff are LGBT actors. " for LGBT rights." The rights in question are not discriminated against in all aspects, such as employment and social society. The institution's vision is to create an Indonesian society that equality, freedom, and diversity of matters relating to the body, gender identity and expression, and sexual orientation. GAYa Nusantara's mission is to conduct advocacy, research, publication, sex education, gender, sexual health, and well-being. Through advocacy activities, they expect the government to issue laws that regulate various sexualities. According to Purba, this is based on Indonesia's Eastern culture, which has been diverse in since the beginning, the most famous being . GAYa Nusantara's vision and mission are clearly stated on social media and news publications on its website. The activity was planned and published as their awareness strategy to the general public about LGBT. The news on the website is a form of their courage in voicing the rights of equality and welfare of LGBT. According to PurbaWidnyana , since the anti-LGBT tsunami occurred in 2016, they have become increasingly curious about LGBT, and the level of interest in opening the web or social media has increased, reaching 9.000 clicks that year . The following news item is " . The following news item was entitled " Achmad Zuhri, Laela Fitriyatul Khoeriyah, Nida Nur Hanifah to be recognized as a person in public. However, many Indonesian people cannot accept LGBT people for several reasons. Many citizens and community organizations, especially religious organizations, refused. The Secretary of GAYa Nusantara stated that there would be no common ground regarding LGBT because GAYa Nusantara has its own opinion, and community organizations have their own opinion based on the legal basis of the organization's religion . Because it goes back again that every citizen has the right to choose and express attitudes, thoughts, and opinions that follow his conscience. Second, " LGBT people and citizens continue to present themselves, just as Dorce once appeared with Jokowi at political events." Reports about transgender people who reveal themselves seem to be an opportunity for with Jokowi at public events. The emergence of LGBT people does not appearance as the number one person in Indonesia became a key and a weapon for them (GAYa Nusantara, 2017b Human rights violations against LGBT people, especially lesbians, often occur in Indonesia. In 2017, there were 973 violence cases against LGBT people, and 73% targeted transgender or transwomen . The commissioner of the National Commission on Women, Adriana VennyAryani, stated that violence against minority groups could be categorized as gross human rights violations, and according to her, there needs to be outreach and public awareness about the protection of minority groups . and same-sex marriage . In the United States, the 2022 Gallup Survey shows that the younger generation is likelier to come out than the older generation. 20.8% of Gen Z identify themselves as LGBTQ+, almost double that in 2017, namely 10.5% . Despite the US context, it can be seen that this is true, and in general, younger generations are more likely to identify as LGBTQ+. In agenda-setting theory, the media is the centre for upholding the truth and building awareness and knowledge of the audience. The distributed news on the GAYa Nusantara portal contains tactics for upholding the truth regarding gender equality . This tactic aims to publish is an important issue that must be fought. providing reliable information about Islam. In addition, NU Online is not only present in the form of a website but also is present on various social media platforms with more than 1 million followers. NU Online has a vision or goal to become a cool and trusted information provider about NU and Islam. Meanwhile, its mission is to produce information that soothes and encourages religious attitudes that are just, moderate, and respects diversity, produce quality information products and become a space for developing high professionalism accompanied by a spirit of service to the people and nation. This mission is relevant to the attitude or views of NU clerics who reject campaigns related to LGBT. So, NU Online is active in presenting news that discusses LGBT from various perspectives from accurate and reliable sources. In producing news, NU Online also has its techniques to achieve the mission of NU Online, one of which is by quoting the people. Kendi Setiawan openly shows that LGBT is not in line with Islamic values, but from a human perspective, it is necessary to accept their existence. . LGBT )." The news explains that same-sex marriage cannot be legalized because it does not meet the requirements for a /religious marriage, and the sanction is handed over to the government through applicable regulations . The latest news relevant to this study is "Hukum Hubungan Seksual Sexual Relations and Marriage Law)." The news explains that lesbian sexual relations or LGBT marriages are illegal and are major sins that have legal consequences in the world through existing government regulations . The news has a propaganda mission and belongs to the type of namely to understand that LGBT is bad behaviour and is prohibited in Islam and is not following Eastern culture. Among the sentences that lead to propaganda carried out by NU online are; First, always say that LGBT behaviour is deviant. This sentence was published in the news on NU Online; it was not stated without a source or law that explained LGBT. News stating that LGBT is deviant behaviour, namely " LGBT Deviant Sexual Behavior)." The news states that the Nahdlatul bisexual, and transgender as deviant behaviour and not following human nature . The next news is " ." The news stated that the attitude of all religions towards LGBT behaviour was clear; that is, it was prohibited and considered a deviant act . Another news entitled "LGBT Melanggar Fitrah Manusia " contains the opinion of Muhammad QuraishShihab in his commentary Al-Misbah which interprets Q.S Al-A'raf verses 80-81. The act of LGBT is a violation of nature and shirk and can be committed in self-defence, whereas LGBT behaviour cannot be accepted for any reason, and there is no way to justify it (Ardiansyah, propaganda is carried out by quoting the words of famous people. the presence of Muhammad Quraish Sihab providing a statement through his commentary work will later make people believe more and strengthen their beliefs about LGBT behaviour which is deviant. Second, LGBT is not religiously correct. In Islam, LGBT is behaviour that violates religion and prohibits religious rules. The Al-Quran explainsin An-Naba verse 8 that humans were created in pairs , not male and male or vice versa. For this reason, in any news related to LGBT, it is always explained that LGBT is not good behaviour Achmad Zuhri, Laela Fitriyatul Khoeriyah, Nida Nur Hanifah by referring to the legal basis and sources of Islamic law regarding LGBT. The Koran also describes LGBT people during the time of the prophet Lut AS in several letters, including in Surat Al-A'raf, Hud, Al-Hijr, Al-Qamar, and Al-Anbiya'. The LGBT people at the time of Prophet Lut were called Sodom people because their area of residence or the place where Prophet Lut preached was in the Sudum or Sadum village . In its history, God punished the Sodomites with hot hailstones and turned the Sodom region upside down. This history clearly illustrates God's wrath against people who do homosexuality . In the news entitled " LGBT Miftah emphasized that LGBT is a form of deviation from human nature, especially in Islam. Because Islam highly values the protection of offspring demand LGBT actors to the right path . The sentence also shows the author's persuasive sentence to the reader. This explanation is propaganda, where the technique they use is to spread or reveal some of the shortcomings of their competitors or the things discussed in the news. In another news entitled " Miftah also conveyed the attitude that Muslims should take; Kiai Miftah urged them to participate in helping and trying to prevent and heal others. Humans, especially those involved in deviant behaviour, have somewhat returned to their nature as human beings with dignity. This effort can be in the form of mobilizing resources for the rehabilitationof people with LGBT tendencies to be able to return to the right path and live straight according to religious, social and cultural norms. In gaining public sympathy and community support regarding Online does not merely criticize and insult LGBT perpetrators as someone despicable and wrong. Even though this behaviour is religiously deviant, as Muslims who care for each other, they should be willing to provide assistance and concern to bring back LGBT perpetrators to the right path. Not only giving criticism but suggestions are still being given so that people, especially LGBT actors, will slowly accept the message. Fourth, LGBT is not following Eastern customs. Kiai Said Asori, as stated that Indonesia is famous for its Eastern manners . The word Eastern for the Indonesian state is the main weapon to ward off cultures, unethical manners or cultures from outside that are the opposite of Eastern culture, one of which is LGBT. In providing understanding for the community, of course, by upholding the customs or culture of the Indonesian people themselves, Achmad Zuhri, Laela Fitriyatul Khoeriyah, Nida Nur Hanifah deviant behaviour should not exist in Indonesia because it is not following prevailing Eastern customs. The news on the NU Online portal contains truth enforcement tactics regarding the prohibition of LGBT. This tactic aims to build about LGBT is a form of deviance. The prohibition of LGBT culture is to society. Moreover, Indonesia is a country with a majority Muslim population. --- Conclusion This article shows that the GAYa Nusantara Portal and NU Online Nusantara is to voice equality of rights and welfare of LGBT people and educate them about sex, HIV and AIDS. In principle, LGBT people are them. It was because of this momentum that GAYa Nusantara was able to attract public attention. At the same time, they aggressively propagated on issues of equality. GAYa Nusantara strives for the government to issue laws protecting various sexualities. With the existence of a law that regulates LGBT, it is hoped that there will be no discrimination in all aspects. Meanwhile, NU Online's mission is to provide understanding to Indonesian citizens, especially the Muslim community, that LGBT's portals are voiced through the news they write and publish using white audiences according to the issues they bring. The two news portals' missions are contradictory, but GAYa Nusantara does not expect a meeting point between them and the community organizations that oppose it. This is because both parties have an equally strong foundation. Then NU Online, which does not agree with or reject the existence of LGBT, hopes that Indonesian citizens will continue to reject the existence of LGBT people but not hate or discriminate against LGBT people. NU hopes that they can to direct LGBT people in the right direction according to religious guidance.
Indonesia is a state of law, but so far, no legislation or government regulations strictly regulate the existence of Lesbians, Gays, Bisexuals, and Transgender (LGBT). So, its existence in society often has pros and cons. At the same time, pro-LGBT groups conduct propaganda, including GAYa Nusantara. Meanwhile, groups opposed to LGBT, such as NahdlatulUlama' continue to reject the propaganda through NU Online. uses agenda-setting theory, literature study, and interview approaches to conduct the research. The data collected is analyzed using news content analysis techniques, namely text, context, and social discourse analysis. This article argues that it is important to understand a news text as the result of an editorial room with a certain mission to convey public information. The mission carries the ideology of the GAYa for LGBT equality and welfare, and the NU Online portal has a mission to reject LGBT behaviour but does not hate LGBT people.
INTRODUCTION The health of people living in slums is a global health priority. 1 About 60% of urban dwellers in sub-Saharan Africa live in slums. 1 Slums are low resource and overcrowded environments deficient in health-related infrastructures, including water, sanitation and hygiene, adequate housing structure and secured tenure. 2 These conditions increase physical and mental health risks. Slum dwellers are exposed to negative neighbourhood effects that affect individual health beyond personal or household characteristics. 3 4 For example, formal and comprehensive healthcare facilities are scarce or inaccessible due to cost or distance, which contributes to the use of healthcare providers such as drug shops and alternative health practitioners. 5 6 Reliance on social support from informal sources such as personal network members are common in these contexts. 7 Lay consultants are the personal network members or informal online sources/networks that individuals discuss an illness or perceived health concern with. 8 9 Open access People speak to lay consultants for three main reasons: to casually report a health concern without intending to seek support, to consult lay consultants for advice and information and to seek instrumental forms of support, for example, loans. 10 People are likely to engage different network members for specific reasons. 11 Some avoid discussing their health concerns with others for personal reasons, for example, to maintain privacy. 12 Lay consultants provide various forms of support, including information or advice, appraisal of symptoms/health problems, instrumental support and emotional support . 13 Provision of these resources has positive or negative consequences on personal treatment decisions. 14 For instance, lay consultants encourage or discourage people from seeking care from a formal healthcare provider. 15 16 Network characteristics including network size , composition and culture are associated with individual treament-seeking decisions. 14 17 The characteristics of a person's network are associated with the person's sociodemographic factors such as age, gender, marital status, residence and access to healthcare. 13 18-21 For instance, women are more likely than men to speak to more people and have diverse networks per illness episode. 22 23 These dynamics are important to understand how people make treatment decisions. Slum dwellers face socioeconomic and environmental conditions that shape their personal and online networks. Being employed in informal labour with tight working conditions and frequent migration in slums contributes to small, closely knit networks, and limits networking with wider networks. 24 25 Living in clustered and intimately shared environments creates avenues for easy interaction, 26 but contributes to loss of individual privacy and friction among neighbours. 27 Digital gaps and low digital literacy is common among slum dwellers in low-income and middle-income countries , 28 which will likely affect access to online lay networks for advice. There is empirical evidence suggesting slum dwellers interact with personal network members including family, friends and neighbours during illness and obtain a range of resources. 5 7 29 30 A recent systematic review demonstrated that lay consultation have positive and negative consequences on treatment seeking behaviours in slum settings of LMICs . 31 However, there are evidence gaps on network characteristics, how personal networks and online networks are combined and how the network characteristics impact on personal health seeking decisions. Getting this evidence requires egocentric techniques, which are used in network studies to elicit information about a network from an ego ; this is lacking in slum studies. 7 Thus, this study responds to these evidence gaps and calls for more population-based studies from informal settlements of LMICs. 32 33 Research objectives In the study conducted in slums in Nigeria, we focus on three objectives: ► To describe the use and characteristics of lay consultation networks . ► To describe the factors associated with the use and composition of lay consultation networks. ► To examine the association between characteristics of lay consultation networks and individual's decision to use formal or informal health services. --- METHODS --- Study design NIHR slum health project: surveys undertaken prior to this study This survey builds on a multicountry project: the NIHR Global Research Unit on Improving Health in Slums . 34 The slum health project involved household surveys across seven slums in Nigeria, Kenya, Bangladesh and Pakistan, to investigate access to and use of healthcare services. The household survey in Nigeria was conducted in 2017, in one slum in Lagos state and two slums in Oyo state. 35 Maps of the structures in the sites were generated and used to select samples for the household survey. 34 Findings from the Nigerian household survey can be accessed here. 35 The survey reported in this article builds on the NIHR slum health survey in the two slum areas in Oyo state, Nigeria. We adopted a cross-sectional design and conducted the survey between November 2020 and January 2021. We used an egocentric survey design to elicit data about networks. An egocentric survey involves using a name generator to ask a participant about their network members and the relationship between them and their network members. 36 This differs from a sociocentric study where information is obtained from egos and alters. 36 Both designs are common in network studies and are selected based on the research question. For this study on people's perception of their use of lay consultation networks, an egocentric design was appropriate. The survey was followed by qualitative research. 37 --- Setting and participants The survey was conducted in the two slum sites located in Ibadan, Oyo state. The sites are anonymised to protect their identities. The slums were selected as they met the definition of urban slums, and were accessible based on negotiations by the prior NIHR slum health survey. 34 Ibadan is one of the largest indigenous cities in Africa. 38 The city has an annual population growth rate of around 2.39% and a current population of about 3 million. 38 39 Slums in Ibadan are characterised by poor housing quality, tenure insecurity, insecurity of lives and property and the absence of basic infrastructures, including water supply and proper housing structures. 40 41 One of the slums surveyed was a migrant community of around 5800 persons, most of whom are young and involved in trading. The second slum was an indigenous slums inhabiting Open access around 5500 persons. Both slums have a high presence of informal healthcare providers including Patent Medicine Vendors and traditional/spiritual healers. 35 We recruited a sample of 480 adults between 18 and 64 years residing in the communities. The criteria for inclusion included being aged 18 to 64, and residing in the community. We used the Cochran sample size formula with an attrition rate of 25%, to arrive at a sample size of 480. We recruited equal numbers of males and females across three age groups to ensure age/sex representation. To recruit the participants, we obtained a spatially referenced sampling frame listing all the structures/buildings in the two study communities, and randomly selected 480 structures. We then assigned a unique identifier and participant category to each structure. Fieldworkers used Global Positioning System to locate each structure to recruit the assigned participant category. In structures with more than one household, fieldworkers listed the households and randomly selected one to participate in the study. Similarly, when a household had more than one person who fit the participant category required, the persons were allotted unique identifiers and a lottery system was used to select one person. Where the assigned participant category was not found in the structure, the structure was recorded and automatically reassigned to another participant category. During the recruitment, three people decided not to take part, and they were replaced with three other participants. --- Data collection We collected data using a semi-structured questionnaire . The survey instrument contained questions adapted from previously validated questionnaires, including the Nigeria Demographic Health Survey , 42 the slum health project 34 and Pew research centre . 43 We added questions developed from reviewing the literature. 23 The instrument comprised five parts with questions on: 1. Sociodemographic status of respondent. 2. A recent illness experience/health concern for which the respondent needed care or advice , their interactions with lay network members or lay online sources of health advice and types of healthcare used for this recent experience/concern. 3. Name-generators 36 -respondents asked to list all the lay network members or lay online sources of health advice for the recent experience/concern. 4. Sociodemographic characteristics, reasons for the interaction and support obtained from each name mentioned in 3. 5. General use of online platforms for advice seeking. The questionnaire was translated into two local languages by linguists and then back-translated by different linguists to check consistency. Following this, it was reviewed at a community workshop in each field site, involving six community members selected through snowballing. We reworked the questionnaire based on their comments, and pretested it with a convenience sample of 20 participants residing just beyond our field sites. We analysed the responses using simple frequencies and percentages, and reviewed the questionnaire based on the results. Trained fieldworkers administered the questionnaire using the Open-Data Kit , an open-source software tool that enables data collection, storage and analysis using mobile android devices. Respondents could choose to participate in the studies face to face or through mobile calls. The COVID-19 public health guidelines provided by the Nigerian government were strictly followed for faceto-face data collection. --- Data analysis The questions on the recency of an illness or health concern experienced by respondents, nature of illness or health concern and how the illness or health concern affected people's daily activities/functioning were openended questions. Responses were first content analysed and then put into categories. We calculated frequencies and simple percentages for all measures. We conducted bivariate analyses using χ 2 to explore the association between network members individual characteristics with type of conversation they were consulted for, and type of support they provided. We ran multivariable associations using a series of logistic regression models 1. individual characteristics and use of at least one lay consultant 2. individual characteristics and having non-kin or mixed networks than family only networks 3. network characteristics and use of formal health services while controlling for individual characteristics. The logistic model analyses were performed at a 95% CI limit, and a p value less than 0.05 was deemed statistically significant. All statistical analysis was done using SPSS V.24.0. --- Patient and public involvement We involved residents and stakeholders from the communities in reviewing the instruments prior to the survey. Findings from this survey will be shared with residents and local lawmakers in the communities. --- RESULTS --- Sample characteristics A total of 480 participants took part in the survey. Response rate was very high at 99.4% . Across the data set, 98% of all questions were completed were completed. The sociodemographic characteristics of the study sample was very similar to that of the population of the informal settlements as established in the slum health study. 28 44 Just under half of the sample reported they experienced an illness/health concern in the week preceding the survey, and that they felt that they need needed care --- Open access or advice for it. Of these, 196 reported illness of health concern was an infection . Other illness/health concerns were headaches, general pain and weakness, specific musculoskeletal pain, gastrointestinal and abdominal issues and 'others' . Almost all the respondents used some form of care, and majority of them used informal healthcare practices/ services. . --- Use and characteristics of lay consultation networks Most respondents spoke to at least one lay consultant during their last illness/health concern. All the lay consultants used were from personal networks; no respondent listed an online network or platform. About nine in 10 persons reported conversations in which they discussed an illness/health concern without intending to seek any particular support. However, almost all the respondents obtained some form of support following the conversations. Lay consultation networks mostly comprised one to two persons, family members only and members of the same household or neighbourhood. Just over half of the sample had networks where no one had internet access. Only very few respondents said they had ever used online sources for seeking health advice . There was a significant association between relationship to network members and Open access ). Similarly, we found a significant association between relationship to network members and type of support obtained from them χ 2 =16.5, p<0.001). Non-family members were more likely than family members to provide information . A slightly higher proportion of non-family members than family members provided appraisal of symptoms and emotional support . In contrast, family members were more likely than non-family members to give instrumental support . These results are presented in online supplemental tables 3 and 4. --- Factors associated with the use and composition of lay consultation networks Being married and perceiving that an illness or health concern had some effects on daily activities had a significant independent association with speaking to at least one lay consultant . Age had a significant independent association with speaking to non-family only networks and mixed networks than family-only networks . --- Association between network characteristics and use of health services Table 4 shows that network variables influenced healthcare seeking, independent of personal characteristics. Respondents who interacted with non-family members only (OR=0. --- DISCUSSION This study demonstrated that respondents commonly interacted with lay consultants when they perceived an illness or health concern. The lay consultation networks used were small and dominated by personal network members characterised by face-to-face contacts. While we intended to describe both personal and online networks, we found that no respondent used online sources of lay advice and people rarely used them when managing illnesses or health concerns. The finding that most people with illness symptoms or health concerns spoke to at least one network member before seeking formal or informal care is unsurprising. Similar findings have been highlighted in other lowincome, 45 and high-income contexts globally, 13 15 23 reiterating that lay consultation is a common process of responding to illness across different context. 46 In low resource settings of LMICs including slums, speaking to network members about illnesses or health concerns may be driven by limited access to formal health advice sources such as official symptom checkers or government health websites. 47 Reliance on informal sources of health for advice and support is common in slums, and it is linked to shortage of public healthcare facilities and inadequate capacity to pay for the private healthcare. 48 Small lay consultation networks dominated by family members have been found in non-slum settings of LMICs and high-income settings. 17 21 Health is a sensitive issue, and people are likely to speak to small number of persons who are available to them and whom they can trust to provide the support they need. 49 In slum settings, it is not unusual for people of working age to discuss their concerns with small number of persons, as they are likely to be engaged with busy work life which makes networking challenging. 25 Keeping small networks of trusted persons in slums is also linked to frequent migration, low reciprocity among neighbours to avoid being overburdened by the needs of others and lack of trust. 24 Our finding that married respondents were likely to speak to a lay consultant supports previous evidence that spouses are important contacts in people's treatment pathway. 19 50 Respondents who thought a health concern affected their daily activities were likely to speak to a consultant. This is in line with published evidence that people are likely to initiate treatment-seeking decisions, part of which is speaking to lay consultants, for symptoms that affect their vocational and social activities. 51 Absence from work have particularly undesirable for slum dwellers who engage in daily informal labour for a daily wage, 5 which makes it unsurprising that they engaged in lay consultation about illness concerns they perceived to affect their daily activities. As reported in other studies, 17 52 older persons were less likely to have non-family only networks or mixed networks. This relates to the socioemotional selectivity theory that an increase in age is associated with smaller social network sizes and network members that provide emotional support. 53 Although our respondent's lay consultation networks were dominated by family members, they were more likely to specifically seek advice from non-family members than family members. This supports the functional specificity theory, 54 which suggests that people seek specific forms of support from their different networks. Our findings showed that non-family members were more likely than family members to provide information, while family members were more likely than non-family to provide instrumental support. Similarly, other studies suggest that friends and networks beyond one's immediate household are more likely to be sources of new information and ideas and family members are more likely to give hands-on support. 55 56 Our findings revealed that respondents obtained appraisal of symptoms and emotional support from slightly more non-family members than family members. This is line with published evidence that show that peers are important for evaluating and guiding others with similar symptoms and providing emotional support. 23 57 Our finding that participants who interacted with nonkin ties and extensive network members were significantly more likely to use informal healthcare rather than formal healthcare is similar to what has been found in other non-slum contexts in a highincome country. 58 Patent Medicine Vendors were the most commonly used informal healthcare among our study participants, corroborating findings from other similar studies. 35 48 While information and suggestions about medicines and remedies can be retrieved from family members, non-kin ties and extensive networks can provide information about new and unfamiliar options. 58 Our survey found that none of the participants utilised online sources in their recent illness/health concern experience and that online sources were scarcely used overall. This contrasts with findings from research conducted in high-income countries which indicated that internet sources were commonly incorporated into people's lay consultation network. 9 59 60 The contrast might be due to the digital and literacy gaps among slum dwellers in LMICs. 28 Moreover, the survey findings highlight the concept of network homophily, whereby people tend to associate with those with whom they share similar characteristics. 61 We found that both participants and their network members had limited internet access. In low resource settings, individuals within networks face similar constraints which affect how they can support each other or share resources. 62 This reinforces the social exclusion and marginalisation experienced by people living in slum environments. --- Open access This survey had some strengths and limitations. Our survey was conducted among adults in slum settings, which are hard-to-reach communities for researchers. 24 We used a robust sampling approach, which allowed us to capture data from a representative sample of adults from 18 to 64 years. We asked about use of both online and personal network members to gain a holistic view of people's lay consultation network in the digital era. This study inherited the limitations of self-reported egocentric network studies in which the data supplied by respondents were not independently verified. 63 For instance, while respondents reported that a network member did not have access to the internet, the data were not verified by interviewing the network member. However, participants' perception of the characteristics of their lay consultants is an important factor for understanding why people engage in lay consultation. 14 There may have been recall bias as participants were asked to recall information about their illness concerns and use of networks, however the short recall period minimises this risk. In summary, people living in urban slums interact with their informal network members to make treatmentseeking decisions. During history taking, healthcare practitioners can investigate advice that people have received and tried, to understand why patients seek their help and other expectations. 64 Health programmes in urban slums should consider engaging community members so, when consulted within their networks, they are able to deliver reliable information about health and treatment-seeking. The findings from this study are likely to be transferable to other slums of LMICs with similar socioeconomic characteristics, limited access to comprehensive and quality formal care, and dominance of informal healthcare. 4 5 48 Twitter Chinwe Onuegbu @chinwe_onuegbu Contributors CO conducted the data analysis and wrote the entire article. JH and FG were involved in the design of the research, reviewed and revised the paper. All authors approved the final version of the paper. CO is reponsible for the overall content as guarantor. Competing interests None declared. Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting or dissemination plans of this research. Refer to the Methods section for further details. Patient consent for publication Not required. --- Ethics approval This study involves human participants. All participants provided informed consent to participate before taking part in the study. Supplemental material This content has been supplied by the author. It has not been vetted by BMJ Publishing Group Limited and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations , and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.
Objectives To describe the use, characteristics and influence of lay consultants on treatment-seeking decisions of adults in slums of Nigeria. Design Cross-sectional survey using a pre-piloted questionnaire. Settings Two slum communities in Ibadan city, Nigeria. Participants 480 adults within the working age group (18-64). Results Most respondents (400/480, 83.7%) spoke to at least one lay consultant during their last illness/health concern. In total, 683 lay consultants were contacted; all from personal networks such as family and friends. No respondent listed online network members or platforms. About nine in 10 persons spoke to a lay consultant about an illness/health concern without intending to seek any particular support. However, almost all (680/683, 97%) lay consultants who were contacted provided some form of support. Marital status (OR=1.92, 95% CI: 1.10 to 3.33) and perceiving that an illness or health concern had some effects on their daily activities (OR=3.25, 95% CI: 1.94 to 5.46) had a significant independent association with speaking to at least one lay consultant. Age had a significant independent association with having lay consultation networks comprising non-family members only (OR=0.95, 95% CI: 0.92 to 0.99) or mixed networks (family and non-family members) (OR=0.97, 95% CI: 0.95 to 0.99), rather than family-only networks. Network characteristics influenced individual treatment decisions as participants who contacted networks comprising non-family members only (OR=0.23, 95% CI: 0.08 to 0.67) and dispersed networks (combination of household, neighbourhood and distant network members) (OR=2.04, 95% CI: 1.02 to 4.09) were significantly more likely to use informal than formal healthcare, while controlling for individual characteristics. Conclusions Health programmes in urban slums should consider engaging community members so, when consulted within their networks, they are able to deliver reliable information about health and treatment-seeking.⇒ To the best of our knowledge, this is the first survey to extensively describe the use, characteristics and influence of lay consultation networks on management of illnesses and health concerns in slum settings. ⇒ The study was conducted among adults recruited through a robust sampling strategy in slum communities which are hard-to-reach communities for researchers. ⇒ This study used an established social network research technique for identifying egocentric networks. This is a novel application and makes a unique contribution to the literature on slum health in low-income and middle-income countries. ⇒ The data supplied by respondents about their network members were not independently verified by interviewing the network members. ⇒ There may have been recall bias as participants were asked to recall information about their illness concerns and use of networks, however the short recall period minimises this risk.
Introduction Inclusive education demands the creation of an open and flexible education system, in which it is possible to remove the obstacles preventing the optimal development of the potential of all children, including children with disabilities . Inclusive education should become a generally accepted policy and practice, and not just an individual intervention relating to one or other vulnerable group . In this wider sense, inclusion is a process of increasing participation and reducing exclusion, where participation is about being recognised, accepted and respected, i.e. being involved in the learning process and social life of the community in such a way as to enable every individual to develop the sense of belonging to society .The concept of inclusive education has undergone significant changes in the Republic of Serbia during the last two decades. The inclusion of children with disabilities in contemporary educational courses, alongside the legislative changes, has Correspondence concerning this article should be addressed to EmilijaLazarević, e-mail: [email protected] initiated a number of reforms in our education system. The current Law on the fundamentals of the education system,adopted in 2009 , is based on the fairness and openness of the education system. It introduces important changes referring to a fairer enrolment policy, increased access to education for children with disabilities, as well as for children from other vulnerable groups, the adaptation of achievement standards, and the preparation and execution of an individual education plan for every CWD. The current Law also envisages the removal of categorisation and the provision of additional educational support to the child/student based on the assessment of an inter-domain committee, introducing a pedagogical assistant for extending support to children and teachers, gradual changes in financing of institutions that support children's inclusion in the education system etc. Additionally, this Law has introduced many changes regarding the place and role of parents of students with disabilities in IE. Parents of students from vulnerable and marginalised groups should participate in the preparation of the IEP for their child, propose experts from outside the institution as members of the team in charge of the education plan, as well as give their consent for the delivery of the IEP. Parents may also opt to be present during educational activities in order to help the child. Although the general principles of the Law on the fundamentals of the education system point to the necessity and importance of efficient cooperation with the family and parental involvement in the education process, the implementation of the cooperation principle is a very complex and lengthy process. Educational practice in Serbia has shown that the key stakeholders in the education process, parents and teachers are in completely different positions, which brings into focus the question of their cooperation and poses a challenge for the development and maintenance of partner relations . In the implementation of IE, the key positions, on the one hand, are given to teachers, who are expected to play very complex new roles adequately. These new roles assume appropriate pre-service education, as well as the acquisition of new knowledge and skills in the IE domain and continuous development . Thus, expectations are imposed upon teachers, and the research findings of many authors internationally and in Serbia that show that teachers do not feel sufficiently competent to respond to the demands they face in inclusive practice . On the other hand, on the part of parents of students with disabilities, awareness of education as the right of every child, as well as awareness of their active role in the creation of the necessary social and educational support, is still in its infancy. Parents of students with disabilities form poorly structured groups with low social power, who do not have the capacity to shape their relations with the school as partners and usually act as individuals . The contemporary concept of education, quality education for all, not only implies the inclusion of students with disabilities in regular schools, but also readiness and positive attitude towards solving specific learning-related problems . The reform of the curriculum, education plans and standards, an individualised approach, reformed schools and a formative assessment are only some of the issues that need to be adequately resolved in order to provide students with disabilities with quality education . In the opinion of some authors, although IE is present in our schools, there are still numerous problems in its implementation . It often happens in current educational practice that the beginning of education of the SWD and the beginning of school-family cooperation are marked by confusion, tension, a lack of openness and distrust , which further hinders the development and progress of these students. The immediacy of these problems in the implementation of the modern concept of IE was an incentive to deal with the issue of the importance of the role and place of parents in solving specific learning-and behaviour-related problems in students with disabilities. --- The family of children with disabilities: problems and needs The cooperation of teachers and parents of students with disabilities implies various complex contextual, cognitive and personal variables and affects somewhat the quality and course of the child's education. A systemic approach to the issue of the development of cooperation between the school and the family of a SWD presumes knowledge and understanding of the structure and functioning of the families of these students. The family system, as a very complex entity, passes through different phases in its development, sometimes relatively continuously, and sometimes interrupted by different normative and non-normative stressful events. The usual problems that occur in the family grow more complex in the case of the family of a SWD. In their initial phases of development, such families face a life event that is unexpected, massive, chronic, and stressful, and which is perceived as difficult to solve, undermining all the expectations and notions formulated about family life. Finding out about the child's disability brings parents into an existential crisis, since it seriously disrupts their basic beliefs about life, the basic feeling of safety and trust, and activates various ambivalent and unresolved feelings . For the family, a child's disability is one of the most difficult accidental or paranormal events that can be experienced. Parents of students with disabilities often express emotional reactions in the form of guilt, loss of self-respect, chronic sorrow, feelings of separation, etc., which can lead to the isolation of the family and the setting of rigid boundaries towards their environment . Such reactions can partly be explained by the attitudes of society, which are often, at least implicitly, negative. Divorce is more frequent in families with a CWD than in families that do not have this kind of problem. Even when the family remains whole, the father is often absent from home and communicates with the child less . Analyses of problems encountered by families with a CWD show that their problems can be grouped into three levels: . Families with a CWD are under specific kinds of pressure, and in order to achieve their optimal functioning, it is first necessary to determine the specific characteristics of these family systems and the effect of the child's disability on the functioning of parents and individuals, on the married couple and on the family system. In addition, when it comes to the successful establishment of partner relations between the family and the school, it should be borne in mind that children with disabilities and their parents come to the school with various unpleasant, traumatic experiences of discrimination and stigmatisation in society. The analysis of opinions and attitudes of parents of children with disabilities has shown that organised activities can have a positive effect on overcoming fears and concerns about the inclusion of their children into the regular programme . The needs of students with disabilities and their parents in IE are varied, and they are also conditioned by the type and characteristics of the disability. However, regardless of the type of disability, the main need is for parents of these students to become active and responsible participants in the education process in which their child is involved. - --- The role of parents in inclusive education There is a range of varying factors that influence the establishment of parent-teacher cooperation, and these include cultural, linguistic, socioeconomic and historical factors . Various authors have posited parental participation in education figures as one of the most important aspects of current educational reforms in many countries, and also as the fundamental principle of the contemporary concept of IE . Parents are thus facing increased demands related to the process of their children's education. Such demands, an opportunity or a challenge in the life of today's parents, collide with others, such as work and efforts that have to be invested to cope with the fast pace of life, and an omnipresent increase of uncertainty . The readiness and motivation of parents and teachers to form a partnership is a starting point in the fulfilment of parental roles in the education of their children. Establishing trust between parents and those who provide help for the child, the school team monitoring and supporting the child's development is an important precondition for the beginning of cooperation . The preconditions for establishing good cooperation between parents and educators comprise parental satisfaction with their level of involvement in the preparation of individual education programmes, a realistic assessment of the child's abilities, accepting responsibility for the children, successful communication, the stability of relations and well-organised bureaucratic support. Parents play an important role in the development of successive inclusion programmes and hence many countries provide guidelines for the active participation and involvement of parents in their children's education . True cooperation implies partnership in the planning and implementation of the decisions made, the same norms of behaviour and commonly accepted goals. The success of cooperation between the school and the family depends largely on the communication competence of both subjects, including parents as important partners in the encouragement, and the maintenance and enhancement of this cooperation. Setting boundaries between home and school becomes an important precondition for establishing satisfactory cooperation , while the blurring of boundaries and the lack of clearly defined roles have an unfavourable effect on the development of partnerships . The beginning of partnership with the school is burdened by numerous fears experienced by parents of children with disabilities: How will the school accept the child? Will the child manage to master at least one part of the curriculum? Will he/she be accepted by the teacher and peers? Will the child begin to resent school commitments when he/she encounters the first problem? . Unfortunately, most of these fears are justified since, even before the child starts school, parents have had many negative experiences . Still, notwithstanding the fears, parents of children with disabilities think that inclusion in regular education proves useful for them and their children. Inclusion enables them to solve or mitigate existing problems, to form a realistic perception of the child and his/her abilities, to establish quality mutual relations in the family, to exchange experiences with people who have similar problems and to find relief from everyday burdens and anxiety . Parents of students with disabilities think that inclusion helps their children to "become aware of their potential", "socialise", "find friends", "become useful citizens" and "acquire the necessary experience for developing friendly relations with typically developed children". They also mention that their children need a model for learning speech and social skills, and this opportunity is provided by inclusive education . Connecting the school and the family is a very important component of the school policy. The foundations for building successful cooperation between parents and the school include the establishment of equal, appreciative and student-oriented communication between parents and school, psycho-social support, the enabling parents for active involvement in the education of students with disabilities and an active attitude towards educational contents and educational policy. Various kinds of parental involvement in school life help them understand the way in which the school functions, its structure, organisation and curriculum, and encourage the development of competences for cooperation with the school . Todd and Porter have emphasised that schools view parents as "homogenous groups" with similar values, while in reality parents are diverse individuals who vary in beliefs, values , ethnicity, language , cultural background , educational and socio-economic status , as well as individual life experiences. Observing parents as a broader group, differences arise between parents of students who have no disabilities and parents of students with disabilities . Parents of students with disabilities face specific challenges relating directly to their child . Many parents of students with disabilities are required, if the need arises, to cooperate with teachers and have a different relationship with schools than other parents . The contemporary concept of education ensures the parents of a SWD the right to choose the school where their child will be enrolled. The new role and place of parents of students with disabilities implies their active participation in the preparation of the IEP, proposing members of the team which will prepare the IEP, monitoring the learning process, and involvement in curricular, extracurricular and after-school activities, as well as participation in councils and the management structures of the school. The parent as a partner in the expert team is an irreplaceable source of information about a CWD. Parental experiences and knowledge about the peculiarities of the impairment, early development and socioemotional developmental status, as well as about the child's preserved potentials and strengths, are invaluable for positive educational outcomes. Recognising the preserved potentials as well as the abilities that can be built upon them helps class teachers and teachers to determine the direction they should pursue in further work with the child . All members of the team preparing the IEP, including parents, are given clear tasks, as well as explanations of how to accomplish them. In addition, well-planned short-term and long-term programmes can provide parents of these children with quite varied types of activities they can be involved in according to their preferences, commitments and abilities/skills. This opens up the possibility of various forms of participation, starting from the simplest, such as informing and consulting the parents and their active participation in parentteacher meetings, to attending classes, helping the teacher in working with children or working with children at home, participation in the preparation of school development plans and participation in various school teams dealing with the organisation of curricular and extracurricular activities. The findings of numerous studies indicate that parental involvement in various school programmes has significantly contributed to their children's educational progress, higher motivation and self-respect, the alleviation of behavioural problems and reduction of expulsions from school, the progress in general care of the child, as well as to the improvement at many other levels within the family . It has also been noted that there is a correlation between increased parental involvement and positive achievement in literacy and numeracy domains, increased attendance and reduced absenteeism , as well as improvements in behaviour management in school and classes . The development of successful cooperation in IE largely depends on the class teachers'/teachers' work in the team, together with parents, experts and other professionals. It is hence important for the teacher to build the skills and abilities necessary for teamwork, such as: communication skills, cooperative skills, responsibility, exchange of opinions, appreciation et al. . Some class teachers/teachers think that parental involvement is efficient, while others are of the opinion that it is a source of conflict and hence avoid it . Researchers in the United Kingdom have identified certain typologies of parental involvement in their children's education. According to Vincent these include parents as consumers, as participants, and as independent parents. In the United Kingdom, after the 1988 Education Act, the emphasis was on parent-school partnership. This empowered parents belonging to the well-off middle class to gather more information about schools, to select schools, to get involved in school governing bodies etc. . The consequences of these changes have led to tensions in parent-school relations since teachers have felt that parental involvement is a form of supervision and that their professionalism is being called into question, challenged and undermined . However, teachers have different attitudes towards students with disabilities, which consequently leads to differences in the readiness for cooperation with parents of students with disabilities. Teachers expressed positive attitudes towards the joint education of students with disabilities and their peers, but more than half of the teachers who participated in the study thought that a selective approach was necessary, adapted to the type and severity of the impairment. They supported inclusion from the humanitarian aspect, but the majority expressed doubts about the academic achievement of the class that included a SWD . --- Cooperation between the school and the family in the context of IE: experience from educational practice The contemporary concept of the parental/family contribution to a child's work at school entails new strategies of parental involvement. They are based on the philosophy of comprehensive and supportive partnership between the family and the school. Parents play a central role in this vision of cooperation, and the platform has been extended and deepened . However, research findings point to a discrepancy in the perception and conceptualisation of cooperation on the part of school principals, teachers, parents and students, what is most prominent in the expectations related to the roles created in different contexts . The results of a study on parental involvement in school conducted in 2008, which comprised 2273 school principals from South East Europe 1 , point to the readiness of principals in all seven countries to involve parents in school life. They 1 The international report of the project "Advancing Educational Inclusion and Quality in South East Europe". expressed the belief that such involvement could contribute to the quality of learning and school surroundings. At the same time, however, the research results showed that in practice there were very few quality opportunities for parents to be involved in school work and school management . The findings of a study2 conducted among 200 primary school principals in Serbia on their attitudes towards the possibilities and practice of parental participation in school showed that principals thought that parental participation was an important part of the school life, which contributed to a positive atmosphere in school, the motivation of other parents for participation and to students' success. However, in Serbian schools, participation is mostly reduced to subsidiary activities that are not related to the process of education in a narrow sense or to school organisation. Parents of students with disabilities take part in extra-curricular activities , the renovation of school premises , as well as in various charity events. Principals perceive parents themselves as the greatest obstacle to parental participation in the process of education, more specifically, their lack of interest in, and lack of readiness and competence for, participation. Parental participation in this study referred to the level of parental information about different aspects of school life, consultation with parents and appreciation of their opinion in making decisions, as well as to parental participation in the process of decision-making in various areas of school life . It is most certain that parent-school cooperation is conditioned both by the type and degree of the impairment of students with disabilities. Research findings about the way in which cooperation takes place between parents of children/students with autism and the school are discouraging. Parents of these students see cooperation as mutual appreciation, a constant exchange of information, the school's acceptance of the child, accepting parents' suggestions, the possibility of being involved in making decisions related to their child, and the possibility of being involved in the preparation of the IEP. According to parents' statements, teachers regularly characterise them as parents who do not accept their child's problem and who hold unrealistic expectations regarding the child's educational achievements. The dominant feeling of parents about cooperation with the school is that they are not accepted as partners whose suggestions and information about the child are considered relevant and credible . The findings of the study "Inclusion between desires and possibilities" 3 on the status of the implementation of inclusion in the Republic of Serbia, which take into account the fact that the formal, official part of the introduction of inclusion was the school year 2010/11, point to the necessity of extending support not only to the persons who work with children in the inclusive process, but also to the children themselves and their parents. Class teachers/teachers and associates from 117 schools in the Autonomous Province of Vojvodina claimed that the team for the execution of the IEP most frequently comprised: a school principal, a pedagogue, a psychologist, a homeroom teacher and a teacher teaching the particular subject, and less frequently: a parent/caregiver, a special education teacher and a speech and language therapist. These findings, which offer an insight into the manner of preparation of the IEP and parents' readiness to give consent for its execution, are not encouraging. Only a small number of parents were involved in the preparation of the IEP for their children from the beginning. The most frequent opinions were that parents of a SWD participated in the process of preparation of the IEP in some way, that they were involved from time to time or that they did not take part in its preparation at all. The preparation and execution of the IEP is possible only with parental consent. The following are the reasons most often cited for parents not giving consent for the execution of the IEP: lack of information; non-acceptance of the fact that due to developmental impairments their child needs a different mode of education; the association of the IEP with special education schools; the misconception that the child will be stigmatised and discriminated; their own shame because their child is different from other children; concern that the child will be isolated and rejected from the environment; lack of understanding of the advantages of education guided by the IEP and the low level of education of parents. However, if the parents do not give their consent for the IEP even after the measures undertaken by associates, the student's class teacher/teacher or the expert team dealing with inclusive education, the individualised method of work is applied, without the preparation and execution of the IEP . The results of N. Polovina's research into the way in which parents of students with disabilities perceive the inclusive potential of Serbian schools point to difficulties that have been analysed on the macro-, meso-and microlevel, their interpretation and consequences. Parents of students with disabilities relate the majority of their difficulties to macro-system factors . They emphasise that there is no system of continuous support, especially in the domain of finances, and they face prejudice and lack of understanding in the very institutions that should provide help to the child. Parents relate many difficulties to meso-system factors : they encounter "incompetent associates" whose activities cause damage both to the child and the family, lack of understanding for the behaviour of a CWD, proclamations about accepting diversity while showing prejudice and rejecting those who are different. Parents of these children feel lonely and marginalised and are often considered responsible for the child's condition. The micro-system factors that pose difficulties to parents include the many different demands placed upon them , and half of the parents stated that they had not managed to overcome the trauma of birth/facing the child's handicap, that is, were unable to accept the fact that they cannot provide a normal childhood to their child . --- Discussion and concluding remarks Parent-school cooperation in the system of inclusive education has been a focus of research in recent years. The findings obtained indicate that there are advantages and benefits to be gained by all participants in education . Still, this cooperation is not satisfactory in educational practice. When it comes to Serbian educational practice, the cooperation of parents of children with disabilities and the school abounds with problems, ranging from the lack of readiness and motivation on the part of parents and teachers to establish a partnership, and insufficient or inadequate parental involvement in the process of preparing en IEP, to partial mutual understanding and support. The experiences and results of the studies on IE in the transitional circumstances in Serbia indicate that its current implementation is far from satisfactory. There are still numerous obstacles to the implementation of the inclusive process, and parental experiences tell us that the school and the local community still do not perceive parents as active and equal participants in making decisions about their children's education. Additionally, they are not adequately and satisfactorily involved in the education process itself, regardless of their legally guaranteed right to be so. In the declared intensification of the involvement of their children in the flow of regular education, parents see yet another cycle of "optimistic rhetoric", which is not accompanied by a thorough or comprehensive preparation of the key stakeholders, and which carries the risk of unfavourable consequences for their children " . The findings of the studies conducted in Serbia enable us to perceive different views on this problem on the part of the school and parents. On the one hand, the school management emphasises the importance of parental involvement in education, and, on the other, parents of students with disabilities state that they have been involved only in subsidiary activities. Based on such indicators, it can be argued that schools tackle the issues of the involvement of parents of students with disabilities in the education system mostly on the declarative level. Although the new Law has envisaged that parents should be involved in the preparation of the IEP for their children, in practice parents are involved in these activities very rarely, and only in certain phases, although the adequate participation of parents and cooperation with class teachers/teachers might be a good start and an example of good practice in cooperation between parents of students with disabilities and the school. This cooperation requires different forms of participation of parents of students with disabilities in expert teams and educational activities, which might benefit the child in various ways . The development of such partnerships entails the continuous education and training of teachers who implement inclusive practice, but it is also vital to educate the parents, who are very important factors in the contemporary concept of education. Raising the awareness of all the stakeholders in this process should be the primary objective of the creators of education policy since it demands a very complex process of continuous education, as mentioned above. Studies show that parents of typically developed children and parents of children with disabilities are ready to accept the inclusive system of education when it is well-founded and when experts are trained to understand children's needs and adapt their working methods and teaching aids . When it comes to the role and place of parents of children with disabilities in inclusive education in Serbia, it can be argued that this area of the school system has not yet been fully researched, and that there are a number of research questions that should be examined in the future in order to enhance the educational and social conditions of the development of children with disabilities. An especially important issue among them is the development of the concept of continuous institutional support for parents of children with disabilities provided by the system, followed by the issue of the development and nourishment of partner relations and teamwork between parents and school experts, who will provide mutual support for the involvement of children with disabilities in the education system. --- Aknowlegments This article is the result of the project From "Encouraging Initiative, Cooperation and Creativity in Education to New Roles and Identities in Society" No 179034 and of the project "Improving the quality and accessibility of education in modernization processes in Serbia" No III 47008, financially supported by the Ministry of Education, Science and Technological Development of the Republic of Serbia.
The current Law on the fundamentals of the education system adopted in 2009 states that inclusive education is a legal obligation in Serbia, which has resulted in the increased accessibility of education for children with disabilities in regular schools. Numerous challenges have been encountered in the implementation of inclusive education in our country, while the role and place of parents of children with disabilities in inclusive education has remained very important. In spite of the changes implemented so far, solutions for enabling support, procedures and mechanisms for the accomplishment and development of partner relations between teachers and parents in inclusive education have not yet been sufficiently developed in our education system. Parents of children with disabilities in our country are rarely partners in the process of education in which their children are involved. This paper discusses the role and place of parents of children with disabilities from the standpoint of the current situation in inclusive education by reviewing the results and reports of current studies in our country.
people hold considerable political power and fulfill primary roles in socializing younger generations . However, midlife is also strained by the nearness of retirement and ongoing responsibilities for others across family generations, which also make it difficult to recover from financial losses . --- A Life Course Examination of Agency within Structure Models of "human agency within social structure" probe how individuals make decisions and take actions to exert control over their lives amid the constraints of their current and cumulative social circumstances . In the present study, financial losses are measures of exogenous shock to individuals' lives. "Agency" is conceptualized as change in the engagement of interpersonal resources in response to financial loss, which we conceptualize as occurring within the "structure" of unequally distributed socioeconomic resources. We measure the efficacy of these efforts by examining change and stability in individuals' sense of control during the study period. Figure 1 presents our conceptual model of how responses to financial loss are structured through socioeconomic resources. --- Is All Financial Loss the Same? Although the effects of the recession were broad in reach, we focus on losses in income and wealth. Economic structures of income and wealth exist in distinct temporal frames . Although conditioned by earlier phases of the life course, income is present oriented in its relevance to current needs such as housing, food, and daily expenses. Losing income therefore requires immediate adaptation . Saving, on the other hand, exists in a future-oriented sphere and requires diverting present resources toward future needs. Losing wealth may therefore reduce the number of options available to adapt to financial loss in late midlife and foreclose opportunities such as retirement . Socioeconomic resources may also shape individuals' experiences of and responses to financial loss. At midlife, available socioeconomic resources reflect the accumulation of advantage and disadvantage . We focus on income and education as key socioeconomic resources. Income, as a "proximal" social resource that helps meet immediate needs, not only contributes to reserves that buffer the effect of difficult experiences but also shapes the form and the function of social networks . Education, as a more "distal" social resource in contrast, facilitates the development of self-efficacy and control and also shapes the distribution of opportunities and constraints over time . Although education is rarely studied as a moderator of individuals' responses to financial strain , it is associated with broader social networks and a wider employment opportunities . As a result, middle-aged workers with lower education are less likely to benefit from flexible career paths and are more likely to be displaced. In contrast, workers with higher education may experience the loss of employment as an opportunity to expand professional experiences . Education may therefore channel adaptive pathways and dampen the impact of financial loss. --- Engagement of Interpersonal Resources and Financial Loss Relationships with others provide resources that individuals actively build and nurture in an effort to meet their changing needs across the life course . Research has shown that individuals engage interpersonal resources in an effort to adjust to social change and that the resulting interdependence of social partners also guides life decisions . The form and function of interpersonal resources are also conditioned by broader aspects of social structure in a particular historical time and place . The two forms of interpersonal resources examined in this study-household complexity and giving help to and receiving help from others-occurred in the context of extended life expectancy, smaller families, prolonged dependence of adult children, and the privatization of pensions . Households become more complex as individuals beyond the primary family coalesce to share housing resources in an effort to reduce the cost of living and support others' needs. Although modern households are more nuclear , families today house adult children, other family members, and occasionally boarders . Nevertheless, the nature of household complexity varies across socioeconomic strata. Households with fewer socioeconomic resources are generally more complex in composition as they assist multiple adult members in meeting their financial needs. For those with greater resources, in contrast, household complexity often relates to launching young adult children into adulthood . Of course, families extend far beyond the confines of a single household, with individuals collaborating across extended kin networks to attend to the present and plan for the future . Giving and receiving help includes financial and in-kind exchanges , and the form of exchanges differs depending on the socioeconomic resources available within the extended kin network . Individuals modulate the strength of ties with others by increasing or decreasing help given and received and also through relaxing or tightening definitions of kin and role responsibilities . Giving and receiving help increases the strength of ties within kin networks and can influence important family decisions, such as geographic relocation and career choices . --- Maintenance of Sense of Control Although individuals and families are known to actively engage their resources in response to external assaults , less is known about whether activating interpersonal resources facilitates or hinders the perceived capacity to exert influence over one's life. The ability to create and maintain a sense of control is essential to health and well-being across the life span , and the import of sense of control is accentuated in uncertain times . It is also not equally distributed across the population but is highest among those who are afforded greater opportunities and have fewer life constraints and stable environments . Mirowsky and Ross liken sense of control to wealth-a resource that accumulates slowly over time and reflects a balance of actual experiences with hopes for the future. Longitudinal studies have found sense of control to remain relatively stable in midlife and to decline significantly in late life . In this study, we focus on two general dimensions of control: perceived mastery and perceived constraints. Perceived constraints reflect barriers to obtaining goals that individuals believe to be beyond their control. In contrast, perceived mastery represents individuals' perceptions of efficacy or capacity to work toward and achieve goals . --- Research Aims The impact of the Great Recession crossed socioeconomic boundaries and brought unexpected financial loss to many individuals and their families. We use this exogenous shock to examine the following aims: 1. How socioeconomic resources predict the level of engagement in interpersonal resources prior to the recession and subsequent change in engagement into the recession. We expect the level of and change in engagement of interpersonal resources to differ across income and education levels. Giving help to others should be more prevalent among those with more resources, whereas household complexity and receiving help from others should be more common among those with fewer socioeconomic resources. 2. How financial losses in income and/or wealth are associated with changes in the engagement of interpersonal resources and sense of control. Financial loss is expected to be broadly associated with increased engagement of interpersonal resources and decreased sense of control. 3. How increased engagement of interpersonal resources following financial loss is associated with change in individuals' sense of control. We expect that increased engagement of interpersonal resources will be associated with the maintenance of or an increase in sense of control. --- Method We --- Measures of Financial Loss --- Substantial Drop in Income Household income was self-reported and imputed by RAND and included income from earnings, pensions and annuities, social security insurance and social security disability, social security retirement, unemployment and workers' compensation, other government transfers, household capital income, and other income. Household income did not include financial contributions from others also residing in the household . To adjust for inflation and household size, income was divided by the annual federal poverty guidelines to calculate the Income:Need ratio for each household. Proportional change in Income:Need ratio was calculated using the proportional arc of change: & Schwabish, 2011). Following research on annual household income volatility , we defined 50 points on the proportional arc of change as substantial and unique from nonrecession circumstances. --- Substantial Drop in Wealth Household wealth was self-reported and then imputed by RAND to include the sum of all assets, minus all debt. Drawing on prior research, a 50% drop in wealth [ / T1] was defined as substantial and unique from nonrecession circumstances . Experiences of stability and loss in income and wealth between the 2006 and 2010 waves were categorized to simultaneously consider loss in income and wealth and reduce the influence of extreme values: stability/gain in income and wealth was the referent group; income loss and wealth stability/gain ; income stability/gain and wealth loss ; and loss in both income and wealth . --- Effect Modifiers Income, education, partnered status, and gender were considered separately as potential modifiers of the experience of financial loss. To avoid overspecifying the model, nonsignificant interactions were not included in the final analysis, except for partnered status because income and wealth were measured at the household level. Financial resources preceding the recession were quantified as quintiles of the 2006 income to need ratio. Education was classified as completion of the college degree or not. Respondents were coded as partnered , if there were two respondents in the household in 2006. --- Outcome Variables --- Household Complexity Household complexity was measured as the count of residents in the household above and beyond the primary family. Following the U.S. Census definition of shared housing, the following household members were included in the count: adults who were 19 years or older and neither the householder nor the householder's spouse or cohabiting partner and children if they were not the respondent's biological, step, or adopted child. --- Giving Help to and Receiving Help from Others Giving help to others included counts of the number of children respondents were raising at the time of response; grandchildren respondents gave care in the form of time to ; children respondents gave money to ; and parents respondents gave money to . An additional point was added when respondents reported giving money to other relatives and also when respondents provided help in the form of time to friends or relatives . Receiving help from others included counts of the number of children respondents received money from ; parents respondents received money from ; and other household members who contributed financially to the respondent's household. An additional point was added when respondents reported receiving help from relatives . --- Sense of Control Perceived constraints and perceived mastery were measured using the sense of control scale in the self-administered questionnaire . Perceived constraints and perceived mastery were each measured using five items on a Likert scale ranging from 1 to 6 . A higher score indicated higher perceptions of control in the respective domain. The inter-item reliabilities in 2006 and 2010 were high for both perceived constraints and perceived mastery . Confirmatory factor analysis showed two factors to fit the data better than a single factor in this sample. --- Covariates Measures of functional health, race, and retirement were also included to adjust for other factors expected to be associated with the engagement of interpersonal resources and sense of control. Functional health was measured as change in a 12-item index of functional limitations, which included items such as being able to walk several blocks, lift heavy objects, and walk up the stairs. Race was self-reported and included three categories: White , Black , and Hispanic/other . Retirement was self-reported and measured in 2010 . --- Analytic Plan Descriptive comparisons of study covariates across experiences of financial loss were estimated simultaneously using multivariate regression. Multinomial logistic regression was used to estimate differences in the likelihood of experiencing financial loss compared with stability. For aim 1, using negative binomial regression, education, income, and study covariates predicted differences in the 2006 level of household complexity, giving help to others, and receiving help from others. For aims 2 and 3, the effects of financial loss on changes in the engagement of interpersonal resources and sense of control were estimated using conditional change generalized path models. By estimating the 2010 value conditional on baseline, conditional change models estimate change in the dependent variables across the two measurement periods. For aim 2, the effect of financial loss on change in the engagement of interpersonal resources was estimated using the full sample of HRS respondents who were 51-60 years old in 2006. For aim 3, a second model estimated the effects of financial loss on change in sense of control among the subset of respondents who were randomly assigned to and completed the SAQ in 2006 and 2010 . This model also estimated the effect of change in the engagement of interpersonal resources on change in sense of control. --- Missing Values To identify systematic bias of missing variables, missingness was identified and then predicted against the study covariates using logistic regression. Missingness was accounted for using the robust maximum likelihood estimator, which uses all information from partial and complete observations and reduces bias presented by missing data, assuming values are missing at random . Of the 4,457 respondents who met the age criteria and completed the 2006 wave, 504 did not participate in the 2010 survey. Higher income, identifying as Black, and functional limitations were associated with nonresponse in 2010. A total of 103 respondents reported neither income nor wealth in 2010; nonreporters were more likely to identify as Hispanic/other. The effect of financial loss on change in the engagement of interpersonal resources was estimated in the remaining sample of 3,850 middle-aged adults. The effect of loss on change in sense of control was estimated among a subset randomly assigned to the SAQ in 2006 and 2010 . Respondents who completed at least one dimension of sense of control in both waves more likely identify as White and have fewer functional limitations. --- Results Table 1 summarizes the distribution of covariates across experiences of financial loss. In the sample of 3,850 middleaged adults, 2,108 experienced relative stability in income and wealth, 646 lost income, 756 lost wealth, and 340 lost both income and wealth. The likelihood of experiencing financial loss compared with relative stability was not evenly distributed across the population. Women were more likely than men to lose income. Higher income in 2006 and retiring by 2010 increased the likelihood of losing either income or income and wealth. Respondents who identified as Black or Hispanic/other or with functional limitations were more likely to experience all forms of financial loss. --- Socioeconomic Resources and Engagement of Interpersonal Resources For aim 1, we estimated the association of income and education on the level of engagement of interpersonal resources in 2006. These data are presented in Table 2. Those with higher than average income had less complex households, gave more help to others, and received less help from others in 2006. Those with a college degree gave more help to others and received more help from others in 2006 compared with those without a college degree. As shown in Table 3, income and education in 2006 were also associated with change in the engagement of interpersonal resources, independent of financial loss. Those with higher than average income in 2006 were more likely to decrease the complexity of their households, increase the amount of help they gave to others, and decrease the amount of help they received from others. Together, differences in socioeconomic resources in 2006 predicted the level of and change in engagement of interpersonal resources. --- Experiences of Financial Loss and Engagement of Interpersonal Resources For aim 2, we examined the effect of financial loss on change in the engagement of interpersonal resources. As shown in Table 3, both household complexity and receiving help from others decreased among those who experienced relative financial stability. All forms of financial loss were associated with increased household complexity and receiving help from others . The experience of loss on household complexity was lessened among those who were partnered. Although receiving help decreased in general among those with higher income, this effect was lessened in the context of losing wealth or both income and wealth. Giving increased in general during the study period but decreased among those who experienced a substantial loss in wealth. --- Change in Sense of Control For aim 3, we examined the association of financial loss on change in sense of control for the subset of 1,891 respondents for whom those data were available . Loss in income and loss in wealth were associated with increased perceived constraints. In contrast, only decreased wealth was associated with decreased perceived mastery. Education consistently dampened the effect of financial loss on sense of control. For those with a college degree, a substantial loss in income and wealth was associated with decreased, rather than increased, perceived constraints. Similarly, for those with a college degree, the effect of a substantial loss in wealth on perceived mastery was entirely diminished. Engaging interpersonal resources was also associated, to an extent, with change in perceptions of mastery and constraints . Increased household complexity was associated with increased perceived constraints and decreased perceived mastery, above and beyond the effect of financial loss. Increased giving help to others was associated with increased perceived mastery. It should be noted, however, that adjusting for the 2006 level of functional limitations rendered the effect of giving on mastery nonsignificant. --- Discussion We examined middle-aged adults' experiences of financial loss during the Great Recession to understand how socioeconomic resources pattern the engagement of interpersonal resources and the ability to maintain a sense of control in the face of financial uncertainty. This analysis of agency-the engagement of interpersonal resources within a structure of unequally distributed opportunities and constraints-focused on financial loss in late midlife. We chose this life period because it embodies simultaneous attention to the needs of one's self and others, as well as limited time to recover from financial losses . We found socioeconomic resources to predict differences in both the level of and change in the engagement of interpersonal resources prior to and during the Great Recession. Experiences of financial loss were associated with increased engagement of interpersonal resources and decreased sense of control. The form of financial loss, whether in income, wealth, or both, patterned these responses. How individuals engaged their interpersonal resources within the context of financial loss was then associated with differences in the ability to maintain a sense of control. --- Enragement of Interpersonal Resources Prior to the Great Recession To understand how socioeconomic resources structure the use of interpersonal resources prior to the recession, we examined the contribution of differences in income and education to the level of and change in engagement of interpersonal resources. Consistent with research on intergenerational exchanges, we found income and education to differentiate how individuals engaged their interpersonal resources . Prior to the recession and similar to other studies, we found those with less income to have the most complex households and receive the most help . Holding income equal, those with a college degree were both giving more help to and receiving more help from others, which is consistent with reciprocal interactions found in social networks that are supportive of well-being . Income and education were also associated with change in the engagement of interpersonal resources, independent of financial loss. Consistent with research on financial transfers during times of high unemployment , across experiences of financial loss and stability, household complexity and receipt of help from others increased among those with lower income. Similarly, household complexity decreased among those with a college degree. Our findings illustrate how differences in income and education may condition responses to financial loss during the Great Recession. Those with fewer socioeconomic resources entered the recession with networks already taxed by complex households and receiving help from others-both of which further increased, across experiences of financial loss, during the Great Recession. Meanwhile, those with more socioeconomic resources gave more help to others and were therefore potentially able to strengthen their interpersonal resources. --- The Form of Financial Loss The recession affected the lives of many people and households. But we found that what was lost-income to meet immediate needs, wealth necessary to retire, or bothshaped responses to financial loss, above and beyond differences in socioeconomic resources. Drawing from previous research, we expected the engagement of interpersonal resources to increase the most substantially among those who lost income . We found household complexity and receiving help from others to increase across all forms of financial loss. Because families adapt to hard times by withdrawing savings and taking on debt , it is important to note that the increase in receiving help from others and household complexity was most severe among those who lost both income and wealth. Consistent with expectations of responsibility for others in midlife , giving help to others increased during the study period, but less so among those who lost wealth. Wealth is future oriented in that middle-aged adults save in an effort to bequest or meet future needs . That a loss in wealth would result in an immediate decrease in giving help to others is informative, especially in late midlife as individuals attempt to balance planning for their own future with responsibility for others . Experiences of financial loss were also associated with decreased sense of control. Consistent with its future orientation, a substantial loss in wealth was the only form of financial loss to be associated with decreases in perceptions of mastery, a facet of control that taps beliefs about one's personal capacity . This finding extends research that has linked wealth to psychological wellbeing and plans for the retirement by suggesting that losing future-oriented resources such as wealth may also decrease the perceived ability to achieve goals. Although income and education defined the extent to which interpersonal resources were engaged prior to the recession, they did not differentiate engagement in response to financial loss. An exception was receiving help from others-where the general decrease in receiving help observed among those with higher income was lessened in the context of financial loss. Otherwise, consistent with the classic work of Elder on the Great Depression, the engagement of interpersonal resources following proportional financial loss was consistent across levels of income. The effect of financial loss on sense of control, however, was dampened considerably by education. The Great Recession may illustrate a snapshot of how, over extended periods of time, education is associated with maintaining a sense of control following midlife . Individuals with higher education have broader networks and access to a more diverse set of opportunities . This may make it possible to frame financial loss as a challenge rather than an insurmountable obstacle . --- The Potentials and Limitations of Interpersonal Resources Across the life course, individuals engage and invest in a multitude of resources in an effort to maintain a sense of control . We examined whether adapting to financial loss by engaging interpersonal resources facilitated or hindered the perceived capacity to exert influence over one's environment. We found when household complexity increased, so did perceived constraints, whereas when giving help to others increased, so did perceived mastery. Our findings extend previous research on adjusting to financial loss by suggesting that the psychological cost of engaging interpersonal resources depends on how social partners are engaged. The act of engaging interpersonal resources has the potential to strengthen or further strain social ties . Household complexity brings individuals of potentially varying roles and ages together within a single household . This may expand boundaries of responsibility and also increase potential exposure to external assaults. The act of giving, on the other hand, provides a pathway to contribute to the well-being of others, and in this study, it was associated with increased perceived mastery. Beyond themes of intergenerational exchanges, filial obligations and available resources that structure social exchanges , our findings suggest that helping others could be a strategy for maintaining a sense of control in the face of uncertainty. Whether this potential continues into older adulthood, in the context of other sources of strain such as health, is an important avenue for future research. --- Limitations and Future Directions Although this study linked actual loss in income and wealth to changes in the engagement of interpersonal resources and sense of control, it is not without its limitations. First, the positive selection of individuals' willing to participate in research may underestimate the costs of engaging interpersonal resources. Second, with only two waves of measurement, we cannot establish empirically whether the change observed in this study is unique to the period or embedded in a larger trajectory. Research on volatility of household income and wealth over the last 20 years suggest that financial loss, as defined in this study, was unique from nonrecession periods. Because household complexity has been found to fluctuate across months and be level on average , the change in household complexity observed across 4 years is also notable. Similarly, sense of control, known to change slowly over time, was found to vary in this study only among those who experienced financial loss. Third, we acknowledge that subjective measures of control are limited by measurement error and selection and that the meaning and benefit of control may vary across levels of disadvantage. Fourth, this study was not designed to disambiguate the source of income loss, which is also an important direction for future research. Fifth, the causal directions implied in this study cannot be fully established. Our model is grounded in action perspectives on the life course, which assumes that individuals regulate resources to maintain a sense of health, well-being, and control . Finally, our decision to focus on late midlife limited our ability to examine how the experience of and response to the Great Recession varied by age. Although beyond the scope of the present study, inquiry into how older adults' responses to financial loss occur within the context of change in other domains, such as health, is an important direction for future research. --- Conclusion This study explored the potential of adults in late midlife to adapt to unexpected financial loss by engaging their interpersonal resources. We found this engagement of resources to increase among those who experienced significant loss. But our findings also suggest that doing so increases the potential to be exposed to risk as the consequences and benefits of actions ripple across the social network. Therefore, in social environments that are becoming more individualized or unstable, we can expect the engagement of interpersonal resources within networks to increase and planning to be more difficult. Special attention should be paid to how individuals and groups negotiate their lives and to the sacrifices they make in attending to their own needs and the needs of others, as these actions will contribute to their future experiences. The repercussions of the Great Recession will not be fully understood for decades, but the evidence from this study suggests that the lives of today's middle-aged adults have been greatly affected by it.
The "Great Recession" shocked the primary institutions that help individuals and families meet their needs and plan for the future. This study examines middle-aged adults' experiences of financial loss and considers how socioeconomic and interpersonal resources facilitate or hinder maintaining a sense of control in the face of economic uncertainty. Method: Using the 2006 and 2010 waves of the Health and Retirement Study, change in income and wealth, giving help to and receiving help from others, household complexity, and sense of control were measured among middle-aged adults (n = 3,850; age = 51-60 years). Results: Socioeconomic resources predicted both the level of and change in the engagement of interpersonal resources prior to and during the Great Recession. Experiences of financial loss were associated with increased engagement of interpersonal resources and decreased sense of control. The effect of financial loss was dampened by education. Sense of control increased with giving help and decreased with household complexity. Discussion: Findings suggest that, across socioeconomic strata, proportional loss in financial resources resulted in a loss in sense of control. However, responses to financial loss differed by socioeconomic status, which differentiated the ability to maintain a sense of control following financial loss.
Background Low back pain is a common and disabling disorder, ranked as the leading cause of Years Lived with Disability worldwide [1,2]. In China, a country with a population of 1.4 billion people [3], LBP was estimated to impact 67.3 million people in 2016 with an increase of 19% since 1990 [4], and is ranked as the second highest reason for health burden [4]. The annual prevalence of LBP varies between different occupations [5][6][7][8] ranging from 40% in teachers [5] to 74% in garment workers [5]. Considering that the working population reported 2.5 times higher persistent LBP than nonworking population in low and middle-income regions [9], China, the biggest labour force country [10], suffers high economic and societal burden of LBP. The medical service system in China consists of primary medical services and secondary/tertiary hospitals [11]. Western medicine oriented hospitals are dominant in China but many of them have a traditional Chinese medicine department [11]. Each city or county has at least one traditional Chinese medicine hospital [11]. Referrals are not required [12], which means that all patients have direct access to healthcare. Diagnostic imaging is prescribed on a self-service basis or by various healthcare professionals. The excessive diagnostic imaging for LBP in China adds considerable burden on healthcare in China but is also associated with assumptions that diagnostic imaging could identify the causes of LBP [13]. For nearly all people with LBP, it is currently not possible to identify the specific nociceptive source [14]. Intervertebral discs, facet joints and vertebral endplate abnormalities are considered as potential nociceptive contributors to LBP [15][16][17]. There is now considerable research, predominantly conducted in the West, that suggests that attributing LBP to an anatomical basis has an important influence on patients' beliefs. These pain related beliefs are considered to be formed by an individual's past experience of pain and healthcare [18] as well as cultural influences [19]. There is also a large body of research which suggests that there are psychological effects of such biological pain beliefs such as fear avoidance, low self-efficacy and pain catastrophizing beliefs which are related to delayed recovery, poor clinical outcome and chronicity of LBP [20][21][22][23]. Associations between anatomical/ biomechanical pain beliefs and greater fear avoidance beliefs and correspondingly poor clinical outcomes have been found [24]. However, again, the current knowledge about these LBP beliefs [20][21][22][23] or beliefs about causes of pain [25][26][27][28][29][30] mainly comes from high-income countries, most with Westernmedical belief systems. Whether this knowledge would also be applicable to low and middle-income countries such as China [31], and those with different systems of belief requires study [32]. A small amount of research has already suggested that pain beliefs are likely to vary between cultures, races, ethnicities, healthcare and countries [33][34][35][36]. A recent study reported four discourses underlying beliefs of Australians about the causes of persistent or recurrent LBP [30]. The discourses were predominantly biomechanical or anatomical, which is in line with the traditional western biomedical view of health [30]. Comparable biomedical beliefs about the cause of LBP were found in another study attributing pain to anatomical vulnerability of the spine [35]. As Chinese philosophies underpin people's daily life in China, it is likely that these philosophies would influence thinking about health for people living in China [37]. For instance, Yin-Yang posits that the development of a disease is caused by the imbalance of equilibrium in the body [37][38][39]. This ideology suggests that equilibrium can be disrupted by various factors, such as an excess of particular emotions , overload , dietary imbalance and also by climate/weather [40]. Although Western medicine is commonly practiced in China, it is plausible that Chinese philosophies also underpin beliefs about pain and persistence of pain. The discourses underpinning peoples' beliefs about the causes persistent or recurrent LBP for people living in China have not yet been investigated and are important for improving clinical pain management. Understanding patients' beliefs helps us to develop interventions addressing unhelpful beliefs in patients with LBP, and to target those interventions to patients who are most likely to benefit [26]. Successfully modifying patients' pain beliefs might prevent delayed recovery and poor outcome [26]. Therefore, it is important to understand the discourses underlying how people with LBP in China explain the causes of their persistent or recurrent pain. An in depth understanding of the beliefs about causes of persistent or recurrent LBP is argued to be helpful to tailor pain management [23,41], and may be a critical element to reduce the burden of LBP. The primary aim of this study was to explore the discourses underlying the beliefs of people in China about what causes their persistent or recurrent LBP. The secondary aim was to investigate the individual's perception of the information sources of these discourses. --- Methods --- Study design This study used a cross-sectional online survey which was based on an earlier Australian survey exploring LBP beliefs [30]. The study was approved by the scientific and ethical review board of Vrije Universiteit Amsterdam . All participants provided online informed consent. --- Survey The survey was designed in collaboration with the researchers who conducted the Australian survey [30]. The survey was translated into Chinese by one of the researchers who is a native speaker in Chinese and fluent in English. The translation involved direct translation of most of the words, but cultural adaptation where necessary. The appropriateness of the translation was verified and confirmed by a second Chinese native speaker fluent in English. The Chinese survey was pilot tested with four Chinese people , which resulted in slight modifications of the original translation. The survey had three sections: 1) Background information: Participants were asked demographic questions and questions about their LBP characteristics , presence of comorbidities , absenteeism due to LBP , and impact of LBP on daily life ). The Chinese language online survey was uploaded to a professional online questionnaire platform ), and released through WeChat in Mainland, China. WeChat is the equivalent to the combination of WhatsApp and Twitter. The link to the survey was first shared in WeChat via researcher YJL' s personal contacts with lay people and health care providers working in primary medical services and hospitals in China. Subsequently, the survey was further spread through these connections. Responses were translated back into English by a Chinese researcher and checked for accuracy by a second Chinese reviewer. Discussion to consensus was used to resolve translation discrepancies. --- --- Sample size Based on previous study experiences with satisfying the principal of theoretical saturation [30], we predicted that approximately 130 participant responses were needed to identify the range of discourses underlying pain beliefs in a Chinese population with persistent or recurrent LBP. --- Data analysis The survey data in response to the question about causes of LBP were analysed using discourse analysis. Both the discourse and conventional content analysis were inductive which means that no pre-existing theory was imposed on the analysis. Discourse analysis is a qualitative research methodology which considers that language constructs social and psychological reality [42]. This means that the language people use provides insights into how people view and act in the world [42]. For instance, people with LBP who claim that a herniated disc is the cause of their back pain, are considered to have a biomedical discourse underpinning their beliefs about the cause of their LBP. Drawing on these concepts, discourse analysis was used in this study to interrogate the underlying discourses behind the responses given by Chinese LBP population. Three researchers reviewed the entire dataset independently and proposed potential discourses underpinning the data during a meeting. Subsequently, two researchers formulated five tentative discourses in a consensus meeting. The five tentative discourses were reappraised by one researcher . During a second consensus meeting, the five discourses were refined, and consensus was reached between the three researchers . Subsequently, YJL and GGMSP independently reviewed the full dataset again and coded each participant's response into one or more of the five discourses. Initial agreement about the coding was calculated between YJL and GGMSP. Discrepancies were discussed until consensus was reached between the two researchers. Finally, the complete dataset, the coding and the findings of the discourse analysis were reviewed by JS who agreed with the discourses and coding. The data from the final question about where participants' beliefs came from was analysed using descriptive statistics on the quantitative data and conventional content analysis [43] on the qualitative data from option 6 'Other'. In cases where there were overlaps of the answers, the two types of data were compared. This type of analysis was able to provide a descriptive overview of where participants believed the discourses came from. Conventional content analysis was performed by two independent researchers and discussion was used to reach consensus. Sociodemographic and clinical information was analysed using descriptive statistics in SPSS version 24 . Normality of continuous variables was visually inspected by histograms, Q-Q plots and box plots. Also, Z-values of skewness and kurtosis, and the Kolmogorov-Smirnov tests or Shapiro-Wilk tests were performed. If the data were normally distributed, means and standard deviations were reported. Otherwise, medians and interquartile range were presented. To observe whether there were any differences between participants with and without missing data, the main baseline characteristics were statistically tested with independent sample t-tests or Mann-Whitney U tests. --- Results There were no differences in sociodemographic and clinical data between participants with and without missing values. In total, 171 participants agreed to participate in the study. Nineteen participants were excluded as they did not fulfil the selection criteria or had missing values for question 17 . A total of 152 responses were included for data analysis. Seventy-three percent of the study population was female, 98.7% were Chinese nationals and most came from South Central China , which is also the second most populated region [44] . Fifteen percent indicated that they experienced LBP every day and the mean pain intensity was 3.9 on a 10-point numeric rating scale. Additional participant characteristics are presented in Table 1. --- What is your perception of why your low back pain is persistent or recurrent? Five discourses were identified. Most participants answered this question with one or two sentences, and their responses were assigned into one or more of the identified discourses. The initial agreement between YJL and WSP was 90%, and all discrepancies were resolved through discussion. An overview of the five discourses is presented in Table 2 and below. --- Discourse 1: LBP as a biomedical problem 'LBP as a biomedical problem' was the most prevalent discourse. Two-thirds of the responses were underpinned by this discourse. Participants explained their persistent or recurrent LBP by physical damages, incorrect posture, muscle imbalance and congenital issues. Their responses indicated that they considered their body in an anatomical, biomechanical and/or physiological way. Their underlying belief seemed to be that if there was something wrong biomedically in their back that this would produce or provoke pain. For instance, some discussed physical damages as the cause of their ongoing LBP, such as Participant 16, who wrote: "I Fig. 1 Flowchart of the study had an injury during long jump in secondary school and I didn't pay attention to it. So, I probably got LaoSun for a prolonged period". 'LaoSun' is a common Chinese term which means overuse of muscles that can lead to muscle strain and injury [45]. Participant 72 wrote: Probably because of continuous stimuli, and I didn't get the right diagnosis and treatment for my low back injury. In the beginning, I had an injury in another part of the body which caused poor posture during running. Later on, this led to unequal left and right muscle strength which compressed and pushed out my vertebra. Like a number of other participants, Participant 106 also discussed posture, attributing their LBP persistence or recurrence to "Lower-crossed syndrome, anterior tilt of my pelvic causes incorrect posture during standing". And participant 157 wrote: "… Working posture is not correct". Also underpinned by biomedical discourses, one participant indicated congenital issues as the source of their LBP. Participant 98 wrote: "I had an X-ray, the doctor said there is a deformation in my bone, my family members also have hereditary low back problems". Discourse 2: LBP as unbalanced lifestyle 'LBP as unbalanced lifestyle' was the second most commonly reported discourse. Around half of participants' answers were identified to fit within this discourse. LBP was described as a warning symptom or the result of an unbalanced lifestyle. A figurative individualised 'balance scale' that considers exercise, sitting, standing, walking time or load, could be identified from the responses. For instance, Participant 5 wrote: "I don't perform enough exercise and physical activities, I sit for a long time" and Participant 21 thought the cause could be "Doing too much or too little exercise?" Often, 'LBP as unbalanced lifestyle' seemed to be related to the first discourse 'LBP as a biomedical problem'. For example, a quote selected from the response of Participant 59: I think it's because I'm not exercising regularly. When I do go to gym, I will definitely train my lower back muscles with the back-extension equipment. The problem is, I should have gone more frequently than I usually do. First, this participant pointed out the importance of balanced lifestyle . They then related the lack of exercise to the idea that back muscles should be trained specifically . The participant then reinforced the importance of a balanced lifestyle by adding "I should have gone more frequently than I usually do". One response related to unbalanced lifestyle based on traditional Chinese beliefs regarding pregnancy: "I didn't take care of my low back during ZuoYueZi " . This answer related to traditional Chinese health beliefs. ZuoYueZi is a part of Chinese custom that intends to improve health after pregnancy [46]. After delivery, it is strongly recommended that the mother takes particular actions such limiting movement, eating special food and not washing her hair [46]. Also, family members are an important part of ZouYueZi, providing social support to the mother, such as doing housework and taking care of the baby [46]. Discourse 3: LBP is about menstruation and 'kidney' status 'LBP is about menstruation and kidney status' was the third identified discourse. Approximately, 9% of the responses appeared from this discourse. In Chinese culture, menstruation is important to women while 'kidney function' is vital to men. To a certain extent, menstrual function and 'kidney function' reflect reproductive health. The understanding of 'kidney function' in Chinese medicine is fundamentally different to Western medicine [47]. In traditional Chinese medicine, the kidney is not be considered as a real organ but as a symbol that controls reproductive health [40] and causes LBP when the kidney is deficient [40]. As is evident in this quote from Participant 50, "Because of menstruation, I have LBP 2 days before menstruation, but I don't know the reasons behind it", several participants considered menstruation to be the cause of their LBP. Further, Participant 28 wrote, "LBP appears before menstruation" and Participant 37 responded, "Because of menstruation". One male participant indicated "ShenKui" was a reason for his LBP. 'Shen' means Kidney while 'Kui' means deficiency [48]. In China, women are generally believed vulnerable and emotionally unstable during menstruation [49], whereas men who have ShenKui are believed to have low sexual performance [48]. Psychosocial stresses in this discourse may be relevant to the LBP reported by participants. --- Discourse 4: LBP is about the 'five elements' imbalance The discourse 'LBP is about Five Elements imbalance' was only occasionally mentioned but was identifiable from the responses. Related to the balance of Yin and Yang, there are 'Five Elements' in Chinese medicine: Water, Fire, Wood, Metal and Earth [40]. There is a selfregulating balance within the five elements. For example, Water balances Fire, but Fire produces Earth that balances Water in return. In traditional Chinese medicine it is considered important to encourage this self-regulating balance to maintain good health. Water is considered to be the foundation of the other Elements [40]. This appears to be the discourse underpinning Participant 114's response "Drinking too little water will cause it to recur". The Five Elements can represent different seasons, directions, colours, tastes and climates [40]. For example, spring, summer, autumn and winter are represented by Participant 10: "JingShen status is not optimal" 'Jing' means essence while 'Shen' means 'Mind'. 'JingShen' status can be understood as mental energy status. Participant 70: "… also because of life stress and fatigue caused by work" Participant's response can be coded into one or more of the five discourses wood, fire, metal and water, respectively [40]. Climates such as wind, heat, dampness, dryness and cold are represented separately by wood, fire, earth, metal and water, respectively. The self-regulating balance can be disturbed by exterior invasion of cold, wind and dampness which is believed to cause LBP [40]. Also, external cold can affect 'kidney function' when it invades the low back region, which often happens to modern women due to exposure of lower abdominals and loins in modern fashion [40]. Thus, participant's answers related to climates , and seasonal change were considered to be underpinned by this 'Five Elements' discourse. --- Discourse 5: LBP is about energy status The least common discourse was based on 'LBP is about energy status'. In traditional Chinese medicine, 'Qi', understood as a 'matter-energy' or 'vital force', connects physical and mental energies in individuals [40]. Qi should circulate freely inside the body and also flow in and out the body in a healthy situation [40]. A low energy status can be caused by, or causes, 'Qi' stagnation, resulting in muscle pain [40]. Answers related to low energy status were considered to draw from this discourse. For example, Participant 10 responded, "… JingShen status is not optimal". 'Jing' means 'essence' while 'Shen' means 'mind'. 'JingShen' status can be understood as energy status. Also, answers indicating a disturbed energy status, caused by stress or mental fatigue, were underpinned by this discourse. For example, Participant 70 wrote, "… also because of life stress and fatigue caused by work". Where does the perception come from? Most participants selected only one of the five options and did not provide additional sources as 'other' options. Almost two thirds indicated that their perception of what causes their LBP to become persistent or recurrent came from healthcare professionals . The options 'internet' , 'family' and 'friends' ) were also frequently listed. 'Religion' 0 was not indicated as an information source. Originally, the option 'other' was selected by 30 participants. However, two answers overlapped with the option 'healthcare professionals', and were moved from the option 'other' and into the option 'healthcare professionals'. In total, 28 participants selected the option 'other'. One of these reported two information sources and another reported three. Under the option 'other', most reported some sort of self-reflection as information source. Others indicated previous medical related education , scientific literature , and TV programmes as information sources. Three participants provided unclear answers. For example, Participant 19 answered "my personal experience" and Participant 37 wrote "daily observation". An overview of responses for this question are provided in Table 3. --- Discussion This study identified five key discourses underlying the beliefs of people living in China about what causes their persistent or recurrent LBP. The most predominant discourse was that LBP persisted or recurred due to biomedical problems, followed by the discourses influenced by traditional Chinese medicine related beliefs: unbalanced lifestyle, menstruation and 'kidney' status, the 'Five Elements' imbalance, and mental energy status. Most participants responded that their pain beliefs were based on information derived from healthcare professionals followed by the internet and family. A similar study assessed discourses underpinning beliefs about the causes of the persistence of LBP in participants living in Australia [30]. Four discourses were identified in that study: 1) Body as a machine; 2) LBP as permanent/immutable; 3) LBP is complex; 4) LBP is very negative. 'Body as a machine' is comparable with the discourse 'LBP as biomedical problem' and was also the most common discourse in the Australian study. The assumed biomedical causes to explain the ongoing nature of LBP was thus a common trend in both the Chinese and Australian study populations. This comparable understanding of the body between Chinese people and Western people is not surprising. Since 1978 the 'Reform and Opening' policy has been embraced in China, and this has included an increasing uptake of Western Under the option 'Other', one participant reported two information sources and another one reported three medical methods and interventions [50]. Currently, the principal medical practice in China is Western medicine [50][51][52]. However, even in the two-thirds of participants living in China who explained the causes of their pain with biomedical discourse, almost half of them related the causes to other traditional Chinese medicine related discourses. Unlike the previous studies which reported the homogenous usage of biomedical model to explain chronic LBP in Western society [27,28,30] and potentially across cultures [35], in our study, at least in the case of LBP, people in China often think about their health beyond the biomedical paradigm, combining traditional Chinese medicine related beliefs to the aforementioned paradigm. From the answers underpinned by the discourse LBP as unbalanced lifestyle, a metaphorical personalised 'balance scale' about time or load of exercise, sitting, standing or walking could be identified. The language the participants used to describe time or load, was 'too much', 'too little' and 'too long'. However, there was no specific duration, number or load mentioned by the participants. This 'balance scale' seems personal. Although lifestyle causes of ill-health are also found in Western medicine, considerations of balance can be found in traditional Chinese medicine which has long discussed balance as a key to health [40,53]. Any imbalance, e.g., the imbalance between rest and exercise, unbalanced emotion or diet, too much and too little work or sex, can become a cause of disease based on traditional Chinese medicine [40,53]. The idea of an individualised balance scale is part of the Chinese culture. LBP as unbalance lifestyle from a Chinese perspective was at times entangled with the common discourse LBP as a biomedical problem as many participants related the time or load with certain positions or postures to explain their ongoing LBP. To a certain degree, the discourse LBP as unbalanced lifestyle may show how Chinese philosophy merges with a Western biomedical view. The other three discourses regarding LBP as menstruation and 'kidney' status, the 'Five Elements' imbalance, and energy status were less common but unique. These three discourses appear to interconnect with one another. For instance, an explanation that the external invasion of cold can cause LBP from the discourse 'the 'Five Elements' imbalance', can be related to the discourse 'menstruation and 'kidney' status', because the invasion of cold is believed to be harmful to 'kidney' in traditional Chinese medicine [40]. Another example of interconnections is the idea that Qi stagnation can cause LBP from the discourse 'energy status'. This concept might be related to the discourse 'menstruation and 'kidney' status', because Qi stagnation is also thought to result in irregular menstrual status and 'kidney' deficiency, which ultimately provokes LBP [40]. Importantly, these three discourses together with the previous discourse 'unbalanced lifestyle', eventually seem to be related to the overarching theme of 'balance' -the key concern of health discussed in traditional Chinese medicine [40,53]. These four discourses likely demonstrate the ongoing impact of traditional Chinese medicine on contemporary Chinese society and represent the complexity of the population's understandings of what causes their LBP to be persistent. The four discourses underlying Chinese people's pain beliefs might indicate high thoughtfulness to the body, mind and environment which may generate related neural networks that collaborate to evoke pain [54] and increase susceptibility to pain. However, these discourses might guide people in China to improve self-management , unlike Western chronic LBP patients often searching for specific medical diagnosis under the biomedical paradigm [28]. Reported by the earlier study [30], the Australian group also frequently indicated their LBP as permanent/immutable and very negative. The Chinese group seemed more positive about their persistent LBP. This Chinese group seemed more positive about their persistent LBP, compared to an earlier similar study [30] that Australian chronic LBP patients frequently indicated their pain as permanent/immutable and very negative. We reanalysed of the present data by reallocating Chinese participants' responses into the discourses LBP as permanent/immutable and LBP is very negative. Only two Chinese participants indicated their LBP as permanent/immutable with possible negative emotions, by complaining about no useful LBP medical interventions available or saying LBP is inevitable and impacts one's study and life. Although the reasons for these differences across the populations are not known, two possible explanations are that; 1) the study may represent a population with less severe symptoms than the Australian study; and 2) stoicism is considered as a positive trait in Chinese culture [55]. In contrast to our findings about patients living in China, other research suggests that Chinese healthcare professionals [56,57] show higher levels of fear avoidance beliefs related to physical activities than Western physicians [58] and medical specialists [59], and Chinese nurses have pessimistic views about LBP as many nurses experiencing LBP planned to quit their job due to their back pain [56]. However, we suggest that these comparisons [56][57][58][59] should be viewed with caution as those other studies used variables developed from Western ways of thinking to quantify pain-related beliefs [34]. Moreover, the overuse of MRI in diagnosing LBP in Chinese hospitals may imply that Chinese care providers are grounded in biomedical causes for LBP [13]. Our study found that healthcare professionals were the main information source of beliefs about causes of persistent or recurrent LBP in Chinese group. This finding was much lower than the previous Australian study where 89% of participants attributed "healthcare professionals" as information source [30]. Information sources 'Family' and 'Friends' were higher in the Chinese sample, compared with 9.0 and 5.0% respectively in the Australian sample [30]. These differences might be explained by a less severe LBP population in our study. Only 15.1% of Chinese versus 82.0% of Australian participants reported having daily LBP. Due to the less severe level of LBP, we assume that less participants needed to seek medical professionals' help. A re-analysis including only the participants who reported LBP every day , revealed that 52.2% of Chinese people with LBP every day, selected 'healthcare professionals' as information source. This percentage is still lower than in the Australian study [30]. However, these comparisons should be interpreted with caution due to the small sample size. The lower percentage of 'healthcare professionals' information source, might also be explained by Chinese people's historical grounding in Confucianism, which emphasises family and community needs over those of an individual. As health concerns are viewed as family problems rather than personal ones, seeking help from healthcare professionals may be considered a shameful revelation of private family matters to outsiders [55]. This might be one reason why less Chinese participant chose to seek medical help, even if they had LBP every day. Confucianism has been identified as a cultural barrier to the Chinese population receiving pain interventions [55]. However, Chinese healthcare professionals have been held negative beliefs about LBP [56,57] and could negatively influence pain related beliefs of patients. Confucianism might be considered positive for people in China with LBP by avoiding unhelpful medical help. It is important to consider the representativeness of this study population. Notably, half of the participants were from South Central China and most other participants were from either East China or North China. This can be explained by the way the data were collected by WeChat as most connections were with South Central, East and North region. Due to the lack of data from less-developed China, the study findings may not be as representative of those parts of China. Moreover, pain beliefs influenced by culture are hard to separate from socioeconomic factors [34,60]. As we did not gather participants' socioeconomic status or educational level in this study, our study findings should be interpreted with caution with respect to representativeness. Considering also to the demographics of this study population with 73% females and generally mild LBP, the results may not be as applicable to populations with predominantly males and people with more severe conditions. Additionally, due to our data collection methods, the representativeness of the current study might also be focussed towards younger and richer people with LBP, as they are more likely to have access to mobile phones, internet and social media. Although we have compared some of our results to an Australian study [30] upon which we based our survey questions, these comparisons need to be interpreted with caution as there were some necessary changes to the wording in line with the cultural translation approach that we used. We did not translate the survey according to the recommended guidelines for translating questionnaires [61]. As the questions were very straightforward, there was little room for misunderstanding, but translational errors cannot be ruled out. We have also attempted to address any potential issues by not overstating the comparisons between the findings of the two studies. The different belief system of LBP population in China found in our study, supports research that suggests that cultural factors influence pain-related factors [19,33,34,60,62]. For example, in contrast with the overwhelming LBP medical care in the West [14,25,32], a Nepalese study showed that people who suffered from LBP continued with their daily activities without seeking medical help as they consider LBP to be a normal aging process [60]. Insights from different cultural perspectives can provide useful information to understand patients' beliefs about the causes of pain and can therefore assist with tailoring treatments and addressing beliefs. Our study is the first study that examined the discourses underpinning pain beliefs in a Chinese population with persistent or recurrent LBP. It demonstrates the complexity of the Chinese population's pain beliefs which are beyond the biomedical paradigm. The complexity of this way of thinking about pain is largely influenced by the concept of 'balance' from traditional Chinese medicine. This study also provides a starting point for future research in pain management. It is recommended for future research that customised interventions to explain LBP appropriately, should contain biomedical and thinking of psychosocial causes with integration of Chinese culture related thoughts concerning causes of LBP. Integrating the concept of 'balance' into modern neuroscience pain education could be helpful for the future management of LBP in China. --- Conclusions The findings of this study support those from previous studies in other cultural groups that suggest that people frequently use biomedical viewpoints to explain the persistence or recurrence of their LBP. This perspective appears to be in Chinese populations as well. However, it also establishes the persistent impact of traditional Chinese medicine on contemporary Chinese society's understandings of LBP mainly related to the concept of 'balance'. Findings suggest that comprehensive LBP management for Chinese people should be culturally relevant, multifaceted and involve healthcare professionals, family and the patient. --- --- Supplementary information Supplementary information accompanies this paper at https://doi.org/10. 1186/s12891-020-03500-1. Additional file 1. The survey. The English and Chinese version of the survey. Abbreviations LBP: Low back pain; YLDs: Years lived with disability Authors' contributions YJL, GGMSP, MWC and JS participated in study conception and design. YJL, GGMSP and JS performed the data collection and data analyses. All authors interpreted the data, wrote the manuscript, read and approved the final manuscript. --- --- --- Competing interests The authors declare that they have no competing interests. ---
Background: Low back pain (LBP) is the second highest cause of health burden in China. Delayed recovery, poor clinical outcomes and persistence of LBP are associated with negative pain beliefs about LBP. Chinese philosophies are nested into the daily life of people in China, which is likely to influence pain beliefs. However, there is lack of knowledge about people's discourses regarding their LBP in China. The primary aim of this study was to explore the discourses underlying the beliefs of people in China about what causes their persistent or recurrent LBP. The secondary aim was to investigate the sources of these pain beliefs. Methods: People (n = 152) from South Central, East and North Mainland China with LBP completed an online survey about what they believed caused their persistent or recurrent LBP and where these understandings came from. Potential causes of persistent or recurrent LBP were explored qualitatively using discourse analysis. The sources of these discourses were assessed by descriptive statistics with conventional content analysis. Results: Five discourses were identified to underpin participants' beliefs about what caused their persistent or recurrent LBP, namely: (1) biomedical problems (66.4%), (2) unbalanced lifestyle (48.7%), (3) menstruation and 'kidney' status (9.2%), (4) the 'Five Elements' imbalance (7.9%), and (5) energy status (5.9%). Most participants responded that their pain beliefs were based on information derived from healthcare professionals (59.2%), followed by the internet (24.3%) and family (23.0%). Conclusions: People from moderately and well-developed parts of Mainland China think predominantly in line with a Western biomedical viewpoint about their LBP. Traditional Chinese medicine related pain beliefs mainly to the concept of 'balance' were evident on contemporary Chinese society's understandings of LBP. These cultural beliefs could be relevant to consider in LBP management and involve healthcare professionals, family and patient in this process.
and college students may see special events like holidays and celebrations as a heightened opportunity for forming or maintaining friendships. --- Peers and Social Networking Websites During College Peers may influence drinking through a number of different mechanisms, including exposure to the social context of drinking, an overall sense of belonging to part of a group, and perceived norms of drinking. First, engaging in alcohol use during college serves as a context for many social activities , and thus, college students may see drinking as a way to make social connections. College students whose friends drink more tend to drink more themselves . Second, alcohol use may serve as a way for college students to explore their identity which may contribute to a sense of belonging to a larger community. Third, college students overestimate how much alcohol other students consume, and these perceived social norms are linked to their own alcohol use . These three types of influence may contribute to how peers affect college students' drinking behavior. Historically, peer influence on alcohol use has occurred through direct social interactions . However, it is possible that recently developed technology serves as another way to receive influential messages about drinking, even from peers one has never met. The influx of social networking websites in the past decade introduces another channel through which peers outside of students' face-to-face social circles may influence each others' behavior. Messages received through social networking may mirror the three types of peer influence described previously, by conveying information about the social context of drinking, a sense of belonging to a larger community, and social norms of drinking. One such social networking website, Facebook, was founded in 2004 and originally limited to college students . As of February, 2011, there were more than 500 million active users . Facebook users create profiles and then make connections with friends. Individuals can use Facebook for a number of purposes, mostly involving social interaction with others such as updating their status , sharing photos, and messaging with friends. One way to interact is to set up a group through which the group founder can make announcements and members can share posts. Students at one university set up such a group in 2007 to disseminate information about State Patty's Day. The majority of college students have Facebook accounts . Estimates vary widely across studies, with college students reporting spending between 10 and 120 minutes a day on Facebook . Communicating with friends is one of the most common reasons that students report using Facebook, although students also report other uses, including finding out about social events . Evidence suggests that college students who use Facebook more tend to have more social capital and to spend more time socializing . Marketers have demonstrated that word of mouth is an accessible form of advertising, recently turning their attention to using the internet, and social networking websites in particular, for such campaigns . For instance, ratings of movies or books on review or retail websites relate to increased movie ticket and book sales . Much as marketers might use social networking websites to spread information, college students can use Facebook in a similar way. The first aim of this paper is to focus on the dissemination of information about the formation of a particular event, State Patty's Day, through Facebook groups. We were particularly interested in understanding what students wrote about State Patty's Day. We examined the content of writing about State Patty's Day to determine the extent to which it conveyed messages about the social context of drinking, a sense of belonging to a larger community, and social norms of drinking behavior. In addition, given the potential consequences of drinking, we examined messages about negative consequences. We also examined how positively or negatively students portrayed State Patty's Day and how supportive they were of the event. These messages about State Patty's Day on Facebook had the potential to influence students' behavior because they may affect students' perceptions of others' alcohol use, and the acceptability and/or desirability of alcohol use in this social setting. --- College Student Celebratory Drinking Research has demonstrated that alcohol use differs by environmental and situational factors. For instance, college student drinking follows a weekly pattern, peaking on Thursdays through Saturdays . Drinking also increases during celebrations of special events like football games , Spring Break , and holidays . Spring Break and many of the traditionally studied holidays occur during college breaks . Some research, though, does show increased drinking during in residence holidays like Halloween and St. Patrick's Day in certain contexts. For instance, students who dress in costume on Halloween have higher BAC levels than those who do not wear costumes , suggesting that preparing to celebrate is linked to the amount of alcohol consumed. In fact, students cite celebration as one of the most common reasons for drinking . Thus, student celebratory drinking is of particular concern. Also, in contrast to traditional holidays, students created State Patty's Day as a day for celebration with other college students. The fact that students can create such a holiday may be of particular concern because it increases the potential for high risk drinking days, and given rapid creation, provides officials with less time to respond. Thus, to examine the impact of State Patty's Day on alcohol use, in our second aim we used daily web-based surveys to determine whether student drinking and heavy drinking increased on State Patty's Day compared to other weekend days. Drinking behaviors differ not only by environmental and situational factors like holidays, but also by individual differences. In the current study we controlled for two such individual differences: gender and drinking motives. Gender is a strong predictor of drinking, with male college students consuming more alcohol than female college students do . Another important individual difference is drinking motives, with motives to experience positive effects of alcohol consumption serving as strong proximal predictors of alcohol use and heavy drinking . Mohr et al. outline two primary types of interpersonal motives for drinking: drinking to enhance positive experiences and drinking to cope with negative interpersonal exchanges. Drinking for fun or social reasons, a motive for enhancing positive experiences, and drinking to relax or cope with stress, a motive for coping with negative exchanges, are both frequently linked with alcohol consumption . Given their known association with student alcohol use, we included gender, fun/ social motives, and relaxation/coping motives as covariates to examine the unique impact of State Patty's Day on alcohol use and heavy drinking beyond individual characteristics. --- Community Impact of College Student Drinking In addition to effects at the individual level, college student alcohol use can have negative secondhand effects on the local community . Beyond extreme consequences like alcohol-specific crashes, communities near universities with high rates of heavy drinking may experience a wide range of consequences of student alcohol use, such as property damage, noise, and disturbances . Crimes linked to alcohol use may include alcohol-specific violations, such as driving under the influence of alcohol, or may include other crimes that could occur with or without concurrent alcohol use, such as vandalism. Research on alcohol-specific crime has demonstrated clear between-persons links, in that people who drink more are cited more frequently for alcohol-specific crime like driving under the influence of alcohol . These behaviors also can occur with specific celebrations; Lewis, Neighbors, Lee, and Oster-Aaland found that 16% of students drove shortly after having two or more drinks on their 21 st birthday. By definition, there are within-person links between alcohol-specific crimes and alcohol use; alcohol-specific offenses such as driving under the influence can only occur when people consume alcohol. There is also evidence of links between alcohol use and other types of crime. In terms of between-persons differences, college students who drink more are more likely to use illegal drugs and commit acts of coercive sex . Research using both retrospective self-report and police report data suggests that some delinquent acts, including violence, vandalism, traffic incidents, car theft, property crime, and graffiti are linked with alcohol use . Less work has examined within-person differences, or whether people are more likely to be involved in other crimes on days that they drink. However, one within-person study suggests links between alcohol use and other criminal acts, in that college students are more likely to engage in vandalism on days they drink more than they normally drink . Limited past work has addressed whether there are community-level events that relate to spikes in criminal offenses. This research suggests that homicide, disorderly conduct, and violent crime increase on certain major holidays . One study in a college town suggested that crime on holidays traditionally associated with alcohol use did not differ from non-holiday, non-football Saturdays . However, the majority of holidays in that study occurred during university breaks, when many students were away. In addition, that study focused on arrests, but many offenses associated with drinking holidays may not result in arrest, at least not immediately. In the third aim of the current study, we examined the effect of State Patty's Day, a student-constructed holiday that occurred during the academic year, on local criminal offenses. Like Merlo et al. , we used community-level reports from police records, but we focused on criminal offenses, examining whether offenses increased on State Patty's Day compared to other days in the same semester. We examined both alcohol-specific offenses and other offenses . We expected increases in both types of offenses, given that even non-alcohol offenses often are linked to individuals' alcohol use . In summary, we had three specific aims. First, we used data from Facebook groups to examine how college students wrote about State Patty's Day on a social networking website. Second, we used daily web-based data from college students to demonstrate the effects of State Patty's Day on individuals' drinking behaviors, controlling for gender and drinking motives. Third, we used local crime data to describe community-level effects of the holiday. By using these three distinct data sources, we avoided relying exclusively on students' selfreported drinking, and could examine the holiday's effects beyond individual participants. --- Method State Patty's Day occurred in a college town with about 80,000 permanent residents and about 44,000 university students. Students' social life predominantly occurs on campus and in the surrounding town because the town is not located near any major cities. There are a number of bars and restaurants in walking distance of campus. The university is a large, state university that requires campus residence for all first year students who are under age 21, not veterans, and not living with an adult relative. During the academic year of data collection, the student composition was about 80% European American/White, 12% ethnic/ racial minority, and 7% international students. As at many large universities, student alcohol use is an issue of major concern and action within the university and larger community. The three aims described in this study pertain to the same community, but they are three distinct sources of data . We describe the methods for each separately. For all groups that referred to State Patty's Day we recorded all text from the group description and wall posts . We treated each group description or wall post as a distinct unit of data, and thus coded each one separately. For reliability purposes, we included all coded data that referred to State Patty's Day 2007Day , 2008Day , or 2009, or a total of 494 units. However, here we report only those groups and wall posts that referred to the first State Patty's Day, which occurred in 2007, resulting in 248 units of data. We chose to report only on 2007 data because our self-report and crime data are based on State Patty's Day in 2007, and we wanted all three data sources to refer to the same time frame. Coding-We developed the content coding system for the Facebook data in two ways. First, undergraduate students who were not coders read through the group descriptions and wall posts, and created lists of major topics addressed in the data. Because the data concern the creation of a new holiday, it was difficult to predict the topics that students would discuss in this forum, and we wanted to ensure that we included all topics present in the data. Second, we categorized these topics into three major categories, based on possible messages from peer influence: social context of drinking, sense of belonging to larger community, and social norms of drinking. In addition, although it did not arise in the original content-generated list of topics, we added physical/behavioral consequences of alcohol use given the frequent occurrence of such outcomes from drinking and their importance for individual health . Three undergraduate students trained and supervised by the fourth author coded all group descriptions and wall posts. Coders independently coded each entry, and then met weekly with the fourth author to discuss any discrepancies. Thus, final data are based on the resolutions of these group meetings rather than individual coders' ratings. Categories were not mutually exclusive; each group description or wall post could be coded into multiple categories. We calculated kappas for each pair of coders. Table 1 presents, for each code, the mean kappa across these three pairs. The average kappa across all three coders and all codes was .79. In addition to coding the content of the Facebook data, we also coded the positive and negative valence of the posts, using procedures similar to past work . We wanted to examine not only what students said, but how they portrayed it. Coders rated positive and negative portrayals using separate scales, because it is possible to portray little to no positivity or negativity, as well as to portray meaningful amounts of both positivity and negativity within one message. Coders were instructed to rate the response based on the writer's portrayal, rather than to evaluate whether they thought something was positive or negative. For instance, throwing up because of drunkenness was not automatically coded as negative unless the writer portrayed it in a negative way. Positive portrayals included things like excitement, joy, looking forward to the holiday, and thanking the holiday creators. Negative portrayals included things like complaining or saying the holiday was dumb. Both positive and negative portrayal used the following scales: 1 , 2 , 3 , 4 , 5 . Intraclass correlations across the three coders were .83 for positive and .83 for negative. A separate team of three coders coded each group description and wall post to determine what year it referred to. They were not mutually exclusive in that each entry could be coded as more than one year. The current paper includes all posts that mentioned State Patty's Day 2007 but excludes posts that only mentioned State Patty's Day in subsequent years. Reliability on whether a post referred to 2007 was acceptable . All discrepancies were resolved by discussion of all three coders. --- Aim 2: First Year Student Daily Online Surveys Participants and procedures-Participants in the current analyses were part of a larger study of college student alcohol use and sexual behavior. Eligible students were first year, second semester students, 18 -20 years old , graduated from high school the previous spring, and were U.S. citizens or permanent residents. Using a stratified random sampling procedure with replacement to achieve diversity in race, ethnicity, and gender, we sent targeted students e-mail invitations. They had about two weeks to complete the web-based baseline survey, which took students about 35 minutes to complete. The day after they completed the baseline survey, they received a link to the first of up to 14 consecutive daily web-based surveys, which took about 8 minutes to complete each day. They received daily email reminders with links to their daily webbased surveys. Participants received a $5 pre-incentive with the initial mailed invitation to participate, $25 for the baseline survey, $3 for each daily survey, and up to an $8 bonus for completing the daily surveys . Students indicated their informed consent with an electronic signature. All data collection occurred during February, March, and April of 2007. Of the 330 invited students, 69% provided baseline and at least one daily survey . A total of 2992 days were available for analysis . Based on self-reports, 27.3% of students identified as Hispanic/Latino. Of non-Hispanic/Latino students, 26.9% of the sample identified as European American/White, 19.4% as Asian American/Hawaiian/Pacific Islander, 15.9% as African American/Black, and 10.6% as more than one race. Measures-The Importance of Consequences of Drinking in the baseline survey assessed between-persons differences in Fun/Social motives for alcohol use and Relaxation/Coping motives (4 items, α = . 88, e.g., "help you unwind"). Participants rated each item on a scale ranging from 0 to 4 . The reliability is comparable to that reported in prior college samples . Mean scores were 1.75 for fun/social motives, and 1.01 for relaxation/coping motives. Based on past research that suggests that student alcohol use peaks on Thursdays through Saturdays , we coded Weekend Days as Thursdays, Fridays, and Saturdays. We coded Friday, March 2, 2007 as State Patty's Day. We assessed Alcohol Use on each of 14 days as the number of standard drinks consumed the prior day on a drop down menu ranging from 0 to 25+ drinks. Students read the following definition of a drink: "half an ounce of absolute alcohol, for example: 12 ounce can or glass of beer or cooler, 5 ounce glass of wine, drink containing 1 shot of liquor." We coded heavy drinking as having 4 or more drinks for women, and 5 or more drinks for men, using guidelines for gender-specific binge drinking . --- Aim 3: Criminal Offenses The local police department provided criminal offense data corresponding to a two month period during daily data collection and included any incidents that occurred on campus or in the town where the campus is located. Individuals described in the incidents were students, local residents, and non-residents. Offense data are more inclusive than arrest data because they refer to incidents that involved the police, whether or not an arrest occurred . We defined a day to include any incident that occurred during the 24 hour period between 5:00 a.m. on that date, and 5:00 a.m. the following date. For instance, we coded any incidents that occurred between 5:00 a.m. on March 2 and 5:00 a.m. on March 3 as occurring on State Patty's Day. We defined days in this way because incidents between 12:00 a.m. and 5:00 a.m. on any particular date were more likely to be a result of drinking that began the prior evening, and individuals involved in incidents between 12:00 a.m. and 5:00 a.m. were unlikely to have gone to bed since the prior day. The police department removed identifying information and then provided us with a file with the following data for each incident: incident numbers, dates, times, reason for the original call , incident description , and location. We used the incident numbers to combine multiple incidents by the same person at the same time into one offense. For instance, one offense could have two or more associated descriptions or incidents . After combining the multiple incidents into offenses, we coded each offense as being alcohol-specific if it fell into any of the following categories: DUI, minor operating vehicle with any alcohol in system, misrepresentation of age to obtain alcohol, furnishing alcohol, alcohol overdose, liquor code violation, open container, public drunkenness, purchase/possession/consumption/transportation of alcohol, and restriction on alcoholic beverage . In instances of multiple incidents for one offense, we coded the offense as alcohol-specific if one or more incidents were alcoholspecific . We then categorized all offenses as either alcohol-specific or other. Table 1 presents the frequency of each code across all group descriptions and wall posts. In terms of the social context of drinking, the most common topic students discussed was bars , including specific bars for celebrating, bar specials, and hours of operation. For instance, one wall post said, "maybe this is just me, but could [someone] post a list somewhere on here of the bars that ARE still supporting? It might make it easier, once the booze sets in, to have something to reference…" Another wall post said, "[bar name] got their beer delivered and they are ready for tomorrow. they will be opening at 12 with green beer ready to be served!" Discussed less frequently in this category was partying . Overall, though, more than 20% of the group descriptions and wall posts about State Patty's Day referred to the social context of drinking. --- Results In terms of sense of belonging to a larger community, the most commonly discussed topic was the sale of State Patty's Day merchandise, such as clothing and shot glasses . For instance, one wall post said, "tell the bars or some stores down town to make tee shirts.. i know a bunch of ppl who would buy them to support this glorious event." Also frequently discussed was the holiday nature of State Patty's Day , which included debating the date for the holiday, whether it was important to honor St. Patrick, and whether the holiday was sacrilegious. There were also more general discussions about the day as a holiday or celebration. For instance, one wall post stated, "Just take tomorrow for what it is: a Celebration YOU ALL helped create. All I and my friends did was put up a facebook group and you all joined and had the say of the people… You made STATE PAT's a reality, and I can never ever express enough respect to you guys for doing so." As another example, a wall post read, "DEAR STATE, thanks for creating a holiday where we can black out by noon, love the students." Also mentioned in more than 10% of descriptions/posts was the university, which included school spirit/pride, and the administration's reaction to the holiday. The group description for the largest group said, "So, [university president name] and the rest of the Administration think they can take away our St. Patty's Day? Move everything back a week and the holiday will just go away? We think not! St. Pat's isn't a day… It's a way of life." As another example, one post said, "I dont think [university name] administration appreciates our movement… i've heard rumors that they are putting pressure on bar owners to cancel any planned celebrations.." Another stated, "I think we should be moving up to number one party school in the country after successfully moving a holiday. Lets see Texas do that!!!" Mentioned less frequently in this category was media attention . Overall though, like social context, sense of belonging frequently occurred in writing about State Patty's Day on Facebook. In the category of social norms of drinking, alcohol use and/or drinking occurred frequently , including getting drunk. One wall post stated, "Is anyone else nearly as excited as I am that Friday will be a day purely made by US for DRINKING!!??? Cuz I cant wait! :-)" and another stated, "i can't wait!! im [planning] on being drunk all day." Within this category, safety and/or responsible behavior was mentioned very infrequently . One instance was the group description for the largest group: "We wanted to publicly state that our intention is not to rally thousands of students to drink all day. The purpose of this group was, is, and will remain to be that of keeping alive the spirit that is Saint Patty's Day. Though events that coincide with the celebrations are of course inevitable, it is more than possible to enjoy ourselves while still celebrating safely." Law enforcement was also mentioned infrequently. Thus, the dominant social norms messages were about alcohol use and drinking rather than safety or responsibility. We also were interested in descriptions/posts that addressed issues of physical/behavioral consequences of drinking, but these occurred very infrequently. Six descriptions/posts mentioned physical/behavioral consequences, most frequently hangovers. Finally, we examined the positive and negative valence of the Facebook data. On average, Facebook group descriptions and wall posts were rated as a little positive . For instance, two entries that were rated high in positive were: "About time someone stepped up to save a National Holiday from being forgotten," and "Complete, complete, complete fucking success. Bravo my friends, bravo." Descriptions and posts were rated on average as not at all negative . Although very few responses were rated negatively, a few were, such as, "This is blasphemy on a biblical scale!" and "I just got back from the most miserable day of work. I was so hungover that I had to throw up twice in the bathroom. It did me dirty." It is worth noting that some responses, though describing events that others might consider negative, were portrayed in a way that we did not rate as negative because we evaluated the writer's perspective. For instance, "1 broken nose/1 bruised elbow/1 lost shoe/st. patty's day…FUCKING PRICELESS!" and "[Name removed] … i take issue with that… but its true… i DO enjoy the afternoon blackout…" --- Aim 2: First Year Student Daily Online Surveys Our second aim was to use daily web-based data from college students to demonstrate the effects of State Patty's Day on individuals' drinking behaviors, controlling for gender and drinking motives. On State Patty's Day, more than half of participants consumed alcohol compared to 29% across other sampled weekend days. Among those students who drank on State Patty's Day, they consumed on average large quantities of alcohol , about two more drinks than did students consuming alcohol on other weekend days . Among students who drank on State Patty's Day, 78% engaged in heavy drinking that day. In contrast, on non-State Patty's Day weekend days that participants drank, 69% were heavy drinking days. We used a non-linear multi-level model with a Poisson distribution for the outcome variable number of drinks because it is a count variable with many zeroes. We used a logistic MLM for the dichotomous outcome heavy drinking. The two daily outcome measures were nested within individuals . The models included between-persons predictors of gender and drinking motives and within-person predictors of weekend days and State Patty's Day. MLM accounts for nesting of measurement occasions within people and allows for inclusion of data from all available measurement occasions, even if a participant is missing data on some occasions, due to greater flexibility of handling missing data than other analyses of repeated measures data . Results from the MLMs indicated that between-persons , students with higher fun/social motives consumed more alcohol on average and were more likely to engage in heavy drinking than other students . Gender and relaxation/coping motives did not uniquely predict the number of drinks consumed or heavy drinking. Turning to the within-person aspect of the analysis, because the likelihood of drinking was quite low on weekdays, students consumed many more drinks and were far more likely to engage in heavy drinking on weekend days than on weekdays . As hypothesized, State Patty's Day was associated with even greater alcohol use than other weekend days , with students consuming 2.3 times more drinks and having 3.8 times greater odds of heavy drinking on State Patty's Day. --- Aim 3: Criminal Offenses Our third aim was to use local crime data to describe community-level effects of the holiday. Figure 1 presents all alcohol-specific and other offenses for each day across approximately two months. The figure shows that crime generally peaked on the weekends, and that there were more total offenses on State Patty's Day than on any other day in the two month period. On State Patty's Day, there were 34 alcohol-specific and 53 other offenses. On an average weekend day during this period , there were 11.6 alcohol-specific offenses, and 30.3 other offenses. Of alcohol-specific offenses on State Patty's Day, 26% were multiple offenses. Thus, reported percentages add to more than 100%. Of the alcohol-specific offenses on State Patty's Day, the most common was public drunkenness . The next most common was purchase/possession/consumption/transportation of alcoholic beverage . Other State Patty's Day alcohol-related offenses included DUI , alcohol overdose , and open container violation . Note that many of these were multiple offenses, so they could include other offenses like disorderly conduct or false ID . Among State Patty's Day offenses that were not alcohol-specific, the most common was disorderly conduct , which included descriptions such as throwing items , loud music, loud noises, public urination, and fighting. The next most common was criminal mischief , followed by theft . All remaining other offenses occurred <10% of the time, and included false ID, possession of marijuana or paraphernalia, harassment, and assault. It is important to note that although State Patty's Day had more total offenses and more alcohol-specific offenses than any other day in the two month period, the day after State Patty's Day there were 63 non-alcohol offenses, more than on State Patty's Day . The bulk of this increase appeared to come from criminal mischief offenses , including damage to vehicles and buildings. --- Discussion In three separate sources of data, we examined how students wrote about State Patty's Day on a social networking website, the effects of State Patty's Day on individuals' drinking behaviors, and community-level crime on the holiday. Messages about State Patty's Day on Facebook focused on social aspects of the holiday, and were rarely negative. Surveyed first year students were more likely to drink, were more likely to engage in heavy drinking, and consumed more alcohol on State Patty's Day than on other weekend days, even after controlling for gender and drinking motives. The impact of this student-constructed holiday went beyond individual drinking behavior, as local crime peaked on State Patty's Day and the day after. --- Dissemination of Information Through Facebook Students' discussions on Facebook about the holiday covered all three examined mechanisms of peer influence, and rarely portrayed the holiday in a negative way. First, messages about bars were one of the most frequent types of messages, thus focusing on a social context of drinking. Alcohol use in college serves as a context of many social activities , and students' messages about State Patty's Day fit within this portrayal of alcohol use for socializing. Second, more than half of the messages on Facebook concerned a sense of belonging to a larger community. For instance, 17% of wall posts concerned how to buy t-shirts and other merchandise that would help students identify with other students celebrating the event. A number of other posts focused on the holiday nature of State Patty's Day , school spirit/pride, or the administration's reaction to the university. Given that alcohol may serve as a channel for identity exploration , students who read these messages and wanted to feel a sense of belonging may have celebrated as a way of channeling their own identity exploration. Third, messages focused on the social norms of drinking, with frequent discussion of alcohol and getting drunk, but with very few mentions of safety. We did not collect data on the influence of these messages on students' actual behavior. However, it is possible that these messages impacted students' actual alcohol use on State Patty's Day and contributed to the high rates of drinking and heavy drinking on that day. In general students perceive that their peers consume more alcohol than they actually do, and perceiving that peers drink more is associated with increased drinking . Although the percent of students who drank on State Patty's Day was high, there were many students who did not drink on State Patty's Day and likely many who drank responsibly. However, the messages on Facebook did not reflect this range of behavior, because very few messages on Facebook described abstinence or safe behavior. If in advance of the event most of the messages that students received were about heavy drinking, then, much like perceived peer norms, this information may have impacted students' own drinking behaviors. Because we did not examine the actual effects of the messages, it is not clear whether the influence of messages on social networking websites are more similar to actual friends or to other forms of media, like television, where individuals may not have personal relationships with the source of the message. It would be important to address this question in future research. Much like marketers can use social networking for word of mouth marketing , students may, more and more, turn to social networking to spread and receive information about social events, including those that involve alcohol. In addition, unlike face-to-face interactions, it is easier to disguise one's true identity on social networking sites, and evidence suggests, for instance, that people sometimes lie about their identities online . Thus, bar owners or employees could potentially use Facebook to advertise specials in posts without presenting the information as an advertisement . This information from other students or establishments could reinforce students' perceptions of the social norms of drinking and a larger community that values alcohol use. The use of social networking websites to disseminate information about alcohol-focused events is not limited to college students or to the United States. Recent press attention highlights the use of Facebook in France to plan apéros géants, large drinking parties in public locations. A recent such event with about 10,000 attendees led to the death of a young man who consumed a large amount of alcohol and fell off a bridge . Although individuals of any age could construct a party-focused holiday, some features of emerging adulthood make such an event more likely. First, emerging adulthood is a period of heightened identity exploration and a desire for autonomy , coupled with a need for interdependence . This need for both autonomy from one's family of origin and connection to others may lead emerging adults to seek out opportunities to feel part of a group of similar others. Second, in terms of the holiday's alcohol focus, heavy drinking increases after high school graduation, peaking during emerging adulthood . Third, the social nature of alcohol use is particularly salient in emerging adulthood. Choosing to drink to have a good time with friends peaks at age 20, with 80% of 20 year olds reporting this social motive for alcohol use . This developmental co-occurrence of desiring both autonomy and interdependence, combined with rates of heavy drinking and the motivation to drink in order to have a good time with friends, likely fueled the appeal of State Patty's Day. As evidenced by Facebook posts, many student messages about the holiday focused on a sense of belonging to a larger community of people from the same university celebrating the same event on the same day. For these students, this larger community may support their developmentally-appropriate desire to feel both autonomous from their family of origin and connected to others. --- College Student Drinking Behavior In a sample separate from the Facebook data, we demonstrated that students consumed more than twice as many drinks on State Patty's Day than on other weekend days, and had almost four times greater odds of heavy drinking on State Patty's Day than on other weekend days. These effects existed after controlling for known predictors of alcohol use like gender and drinking motives, and the person's typical consumption of alcohol on weekend days. The high rates of heavy drinking suggest that many students put themselves at risk for injury, blackouts, and other negative consequences on State Patty's Day. Rates of drinking and heavy drinking were comparable to or higher than those reported for other holidays and celebrations in prior studies, except for 21 st birthdays . Thus, this study demonstrated that even in a short 6-week time frame from creation to celebration, students constructed a new holiday with high rates of alcohol use and heavy drinking. --- Community Impact of State Patty's Day The impact of State Patty's Day went beyond individuals' drinking behavior. The surrounding community saw secondary effects of State Patty's Day, with a spike in alcoholspecific and other offenses. This finding suggests that in addition to the impact on individuals' own safety, there is also impact on community members in terms of risks such as unsafe drivers on the road , property damage, and public nuisance. Past work demonstrates that individuals who drink more are more likely to be involved in criminal acts . In addition, students are more likely to commit vandalism on days they drink more than they normally do compared to other days . Our data demonstrate that these links with criminal behavior extend beyond the individual, such that there was a community-level impact of a heavy student drinking day. Some research with general population data has shown similar effects of major holidays on crime . Although other research on college students did not demonstrate differences between holidays and non-football Saturdays , our findings suggest that there is a link. The data in the current study are from a college town, where college students make up about one third of the local population. In such a town, a student-constructed holiday can clearly have a significant impact on the local community. These effects are almost certainly unintended -when students set out to create a drinking holiday, they most likely did not plan to cause property damage or disturb residents of nearby neighborhoods. Given these potential secondary effects of student drinking, it should not only be the university that is concerned about future student-constructed holidays. Community members -including local business owners -also have an important stake in such events. It is possible that criminal offenses increased on State Patty's Day in part because the local police anticipated the event and increased their workforce on that date. Even so, this response suggests that this student-constructed holiday cost the community not only disturbance, but also tax dollars. The cost to the police force continued into the day after State Patty's Day when other offenses peaked. In particular, criminal mischief offenses peaked the day after State Patty's Day, suggesting that many offenses, such as damage to buildings and vehicles, may have been noticed and reported the next day. Brower and Carroll found similar findings in another college town, with vandalism reports peaking in the morning and early afternoon. The dominant drinking culture of this and other college towns can lead to not only alcohol-specific criminal offenses, but other types of criminal offenses that cost the community money. Thus, the potential dangers of these experiences go beyond the individual and into the surrounding community. In the case of State Patty's day, the impact of this student-constructed holiday extended even beyond this single day/weekend. In the years since 2007, students at this university have repeated the celebration of this student-constructed holiday, with increasing countermeasures from the university, law enforcement, and larger community. --- Implications, Limitations, and Conclusion Students' ability to quickly construct holidays focused on high levels of alcohol consumption poses significant challenges for college administrators, university health care providers, police, and prevention scientists who aim to promote student and community safety and health. The development of interventions for such event-specific risks therefore requires rapid response from year to year. University and local law enforcement personnel need to stay informed of all aspects of student life and activity so that they can identify student-constructed holidays and other potential peak drinking events in time to respond. Event-specific prevention strategies are particularly important in addressing these spontaneous, quickly constructed dynamic events. In addition, ongoing campus strategies, such as offering alcohol-free alternative activities on weekends, have the potential to reduce alcohol use and consequences . Prevention scientists should also consider using the internet and other new media to disseminate information about safety and responsible behavior, modeling students' dissemination of the holiday through these media. This study had some limitations. Although we had high rates of completion of daily survey data, not all students contacted responded to the survey, and not all students completed all 14 days of daily data. Therefore, we cannot generalize to the student population at large, and there could be systematic biases between those who did and did not respond. We included only first year students in this study, and results may differ for older students, particularly those students age 21 or older, who can legally go to bars or restaurants to drink. Because our three sources of data were separate, we cannot determine whether participants in our sample accessed information about SPD on Facebook or how Facebook posts may influence individuals' drinking behaviors. In addition, due to the dynamic nature of Facebook, it is possible that some posts were deleted before we could record them. This study assessed alcohol use at one college campus and criminal offenses in the surrounding town. Our results demonstrate an impact on the community via an increase in alcohol-specific and other offenses. Future studies could also examine the impact of these events on individual drinking behavior in the larger community. That is, do studentconstructed holidays result in increased alcohol use only among students, or do community members also participate in these events? A nationally representative study would not be possible for this type of local holiday. However, future studies should consider similarly constructed drinking-oriented holidays using both quantitative and qualitative methods. In addition, our study examined only public sources of social networking, but we know nothing about individuals' social networking time use. With 13 groups with membership totaling over 4000 members and less than 250 posts, there are clearly many students who are silent consumers of such media. Understanding their experiences with social media around alcohol use and student-constructed holidays is important. Finally, a future study could compare the process of dissemination of information through social networking websites, phone calls, newspaper articles, and other sources. Understanding how students disseminate this information might help prevention scientists in developing programming that uses similar techniques. N=248 total group descriptions and wall posts. Ns for the main categories are sums of any responses in that category, minus any duplicates . Note that main categories add to less than 248 because some wall posts could not be coded into any of the categories presented. Bernoulli distribution was used for the outcome heavy drinking. In both, intercepts were estimated as randomly varying across persons; slopes were estimated as fixed. Level 1: Number of Drinks it = β 0i + β 1i + β 2i + r it Level 2: β 0i = γ 00 + γ 01 + γ 02 + γ 03 + U 0i β 1i = γ 10 β 2i = γ 20
College student alcohol consumption is a major concern, and is known to increase during the celebration of special events. This study examined a student-constructed holiday, State Patty's Day, at a university with a dominant drinking culture using three sources of data -coded data from Facebook groups, daily web surveys from first-year students (N= 227, 51% male, age 18 to 20; 27.3% Hispanic/Latino; of non-Hispanic/Latino, 26.9% of sample European American/White, 19.4% Asian American/Hawaiian/Pacific Islander, 15.9% African American/Black, 10.6% more than one race), and criminal offense data from police records. Results indicated that messages about State Patty's Day on Facebook focused on drinking and social aspects of the holiday, such as the social context of drinking, a sense of belonging to a larger community, and the social norms of drinking. These messages were rarely about consequences and rarely negative. On State Patty's Day, 51% of students consumed alcohol, compared to 29% across other sampled weekend days. Students consumed more drinks (M = 8.2 [SD = 5.3] drinks per State Patty's Day drinker) and were more likely to engage in heavy drinking on State Patty's Day, after controlling for gender, drinking motives, and weekend, demonstrating the event-specific spike in heavy drinking
Background Mental disorders are the greatest global health burden: each year, one in four individuals will experience at least one diagnosable mental health problem. 1 Depression and anxiety are particularly prevalent; in fact, according to the World Health Organization , depression is the leading cause of disability worldwide and is projected to become the world's most burdensome disease in the coming decades. 2 The measures introduced by governments around the world to limit the spread and contagion of coronavirus disease 2019 are being found to have critical implications for mental health, [3][4][5][6] prompting calls for action concerning research examining the impact of COVID-19 on mental health. 7,8 Not surprisingly, the COVID-19 pandemic may be particularly challenging for more vulnerable populations such as refugees, whose traumatic experiences have already been found to significantly affect their mental health. 9 Indeed, the prevalence of psychiatric problems in refugees is particularly high. Although there is considerable variation across refugee populations and assessment measures, a meta-analysis of articles published between 1998 and 2018 documented high lifetime prevalence rates of post-traumatic stress disorder , depression and anxiety. 10 Our study focuses on Syrian refugees living under temporary protection in Turkey. Since the outbreak of the Syrian civil war in 2011, Turkey has become home to one of the largest refugee populations in the world; in fact, over 3.6 million Syrians live in Turkey under temporary protection. 11 Temporary protection status grants Syrian refugees access to public services such as healthcare, education and the labour market. Experts estimate that between 500 000 to 1 000 000 Syrians work in Turkey. 12 Registered Syrians in Turkey have been able to apply for a work permit since 2016according to the Minister of Interior, only 65 000 Syrians have a work permit; 13 however, work permits are not only costly and time consuming to obtain, but they must also be renewed annually. Further, even with a valid work permit Syrians are not eligible to receive cash support through the Emergency Social Safety Net. 14 Lack of language skills and difficulties in transferring university degrees further limit formal employment opportunities for refugees. These restrictions push refugees to take informal jobs in unskilled services and industry. 14 A study by the International Labour Organization estimates more than 97% of Syrians work informally in Turkey. 15 These jobs have become especially precarious with on-and-off measures restricting businesses. Whereas Syrian refugees' problems regarding working conditions, accommodation and discrimination decreased between 2017 and 2019, this is likely to have changed since mid-2020 because of lockdown measures and other restrictions making it more difficult to work during the pandemic. 16 Finally, tensions between Turkish and Syrian communities and significant uneasiness in particular of the Turkish community towards the Syrians has become more visible over the past few years. Although recent research reports a high level of social acceptance of the refugees, it is not clear how robust this is. 16 Hence, although researchers have provided prevalence estimates of mental health problems such as PTSD, depression and anxiety in Syrian refugees in various countriesincluding Turkey, Sweden, Germany and the USA and have investigated the effect of pre-migration, migration and post-migration factors, [17][18][19][20][21][22] we know much less about how the COVID-19 pandemic is contributing to a worsening of mental health in refugees. [23][24][25][26][27] The present study is the first, to our knowledge, to analyse the effect of the COVID-19 pandemic on the mental health of Syrian refugees in Istanbul. --- Aims Our goal is to use our two-wave Syrian Refugee Mental Health Panel Study to examine the association between COVID-19 factors and mental health. Given recent findings of a bidirectional relationship between COVID-19 and psychiatric disorders, 4 it is important to study not only whether the pandemic is associated with mental health deterioration but also whether the latter may act as a susceptibility or vulnerability factor for maintenance of pandemic-related stressors. That is, the pandemic may have negatively affected Syrian refugees' mental health, which may in turn have sustained or increased their worries about their social context, financial situation, and employment status and about antipandemic restrictions. We set out to conduct a series of cross-lag models assessing the relationship among symptoms of depression, anxiety and perceived stress to test whether life changes because of COVID-19 are associated with changes in the mental health of Syrian refugees living in Istanbul. Given the consistent findings of gender differences in depression, 28 which was also supported in some research with Syrian refugees, 17,19,21 we also set out to test for an interaction between COVID-19 factors and gender. Finally, using our two-wave panel data we set out to examine the bidirectional nature of the association between COVID-19 factors and symptoms of mental illness. --- Method --- Study design, setting and participant recruitment We conducted a two-wave panel survey of a representative sample of 302 of the estimated 500 000 Syrian refugees in Istanbul. 11 We worked with the polling firm Frekans Research, which has extensive experience conducting research with Syrian refugees. Frekans Research has a database that includes the contact information for a representative sample of 1200 Syrian refugees in Istanbul. This sample was selected randomly based on government statistics about the residential area Syrian refugees live in. The sample for the current study was randomly selected from that representative sample of 1200 refugees in Istanbul who completed face-to-face interviews and gave their consent to participate in future studies. The participants included adult refugees living under temporary protection in Turkey, but not in camps. Frekans research has validated our questionnaire for Syrian refugees. Professional translators at Frekans Research translated our questionnaire in parallel into both Turkish and Arabic. The questionnaire was back translated into English as well. We conducted the first wave of data collection between 9 and 15 July 2020 , and the follow-up 2 months later between 11 and 14 September 2020 ; the response rate for the follow-up was 70%. Of our 302 Syrian refugees, 50% are females, mean age is 32 , 34% have primary school, 39% middle school, 20% high school and 7% master/doctorate education. The mean total household income per month was 2536 Turkish Liras, 17% were unemployed, 28% had reported to have experienced discrimination in the past 12 months, 47% have reported being very or extremely concerned about the stability of their residential status in Turkey and the average number of years living in Istanbul was 5. The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008. More specifically, Frekans Research is a member of European Society for Opinion and Marketing Research and the Turkish Research Association and was awarded the Trustworthy Research Certificate, and so they abide with the code of conduct of these committees. All procedures involving human participants were approved by the ethics committee of the School of Histories, Languages and Cultures of the University of Liverpool, approval number 7866. Before starting the survey, the interviewers asked participants to give their informed consent by reading the consent wording to each participant, briefly explaining the nature of the study, the approximate duration of the survey, and informing the individuals that participation in the survey was voluntary and that their confidentiality was protected. The data were fully anonymised after the fieldwork and individual ID numbers were created that were used to link respondents' answers in the follow-up wave. All analyses were conducted with Stata 14. --- Measures Our questionnaire integrates a selection of questions about life changes because of COVID-19 from the CoRonavIruS Health Impact Survey developed by the National Institute of Mental Health . More specifically, we used seven items from the CRISIS questionnaire section on 'Life changes due to Coronavirus/COVID-19 crisis in the last two weeks' integrated by one context-specific item about the quality of relationships with the Turkish community . The CRISIS questionnaire asks about respondents' feelings concerning a number of COVID-19-related changes in their daily life, including stress about restrictions of leaving home, change in the quality of social relationships, concerns about the financial situation and feelings of hope towards the end of the pandemic. The rationale of the item selection meets three criteria: budget constraints, survey timing and context. As our surveys were conducted in the middle of the pandemic and not at the beginning and as some of those items were US-specific, our team has selected a subset of items capturing COVID-19 stressors that could be used in later phases of the pandemic and outside the USA. The Appendix reports the full list of COVID-19 questions used in this research along with their response options and scoring range. In the analyses, responses for questions on the quality of the relationships and hopefulness for the end of the pandemic were reversed so that higher values denote more negative or problematic responses. We used three validated measures of symptoms of mental disorders to assess Syrian refugees' mental health. All measures were coded so that higher values reflect higher symptoms. In Supplementary Appendix A available at https://doi.org/10.1192/ bjo.2021.1009 we present the full question wordings and response options of these questionnaires. For symptoms of depression we used the 10-item Center for Epidemiologic Study Depression Scale . 29 The depression scale is a shorter 10-item form of the CES-D. Respondents were asked to indicate how often or how consistently they have felt or behaved this way during the past 2 weeks: I was bothered by things that usually don't bother me; I had trouble keeping my mind on what I was doing; depressed; I felt that everything I did was an effort; I felt hopeful about the future; I felt fearful; My sleep was restless; I was happy; I felt lonely; I could not get 'going'. Response options were: 0, rarely or none of the time ; 1, some or a little of the time ; 2, occasionally or a moderate amount of time ; 3, most or all of the time . For symptoms of anxiety, we used the 6-item State-Trait Anxiety Inventory . 30 Respondents were asked to state how they have been feeling in the past 2 weeks on the following items: I have been feeling calm; I have been feeling tense; I have been feeling relaxed; I have been feeling upset; I have been feeling content; I have been feeling worried. Response options were: 0, never; 1, sometimes; 2, often; 3, almost always. For symptoms of stress, we used the 4-item Perceived Stress Scale . 31 Respondents were asked about their feelings and thoughts in the past 2 weeks: How often have you felt that you were unable to control the important things in your life? How often have you felt confident about your ability to handle your personal problems? How often have you felt that things were going your way? How often have you felt difficulties were piling up so high that you could not overcome them? Response options were: 0, never; 1, almost never; 2, sometimes; 3, fairly often; 4, very often. In the analyses we included a number of pre-migration and post-migration factors for which we asked for information in our surveys: gender, age, education, employment status, total monthly household income, number of years living in Istanbul, whether experienced discrimination, perception of Turkish society's negative attitude towards Syrian refugees, and concern about stability of residential status in Turkey. Descriptive statistics for all variables are presented in Supplementary Appendix B. To maximise comparability of questions across Syrian refugee surveys, we asked many of the above questions in the same way as they were asked in the Syrian Refugee Panel Study, 32 which examines the integration of Syrian refugees into host European societies. --- Statistical analysis We first conducted a principal components factor analysis with varimax orthogonal rotation to derive COVID-19 factor scores. Rotation is a common procedure in that, by forcing factors to be uncorrelated, it reduces ambiguity about which item belongs to which factor. Next, we took advantage of the longitudinal nature of our data and conducted a series of cross-lagged panel analyses based on linear regression models with maximum likelihood random-effects estimator to explore the causal relationship between COVID-19 factors and mental health. Thus, in the models that estimate the effect of COVID-19 factors on measures of mental health at time , we include levels of COVID-19 factors and mental health at time . An example of such models is presented in Equation , where CESD-10 is the dependent variable. We estimate the same model for STAI-6 and PSS-4: CESD-10 ¼ α þ CESD-10 þ COVID-19 Social Relationships þ COVID-19 Social Relationships þ COVID-19 Stress þ COVID-19 Stress þ COVID-19 Hope þ COVID-19 Hope þ εð1Þ Thus, Equation models depressive symptoms at time as a function of depressive symptoms at time , and COVID-19 factors at both time and , where α is the intercept and ε the error term. Similarly, in the models that estimate the effects of mental health on COVID-19 factors at time , we include COVID-19 factors along with mental health at time . Thus, in these analyses COVID-19 factors are the dependent variables and we estimate these models separately for each of our three COVID-19 factors. In these analyses, we also control for the two other two COVID-19 factors at both time and . An example of such models is presented in Equation , where COVID-19 social relationships is the dependent variable: COVID-19 Social Relationships ¼ α þ COVID-19 Social Relationships þ COVID-19 Stress þ COVID-19 Stress þ COVID-19 Hope þ COVID-19 Hope þ CESD-10 þ CESD-10 þ STAI-6 þ STAI-6 þ PSS-4 þ PSS-4 þ εð2Þ Thus, Equation models COVID-19 social relationships at time as a function of COVID-19 social relationships at time , the other two COVID-19 factors at both time and , and our three mental health measures at both time and . For simplicity, the basic models reported in Equations and omit all sociodemographic variables included in the analyses. The longitudinal nature of our data allowed us to examine the bidirectional nature of the association between COVID-19 factors and symptoms of mental illness. That is, COVID-19 factors could adversely affect mental health, and poorer mental health could sustain or increase pandemic-related worries and stresses. Akaike's Information Criterion is a goodness of fit measure that can be used to examine this question 33,34 by comparing alternative models. The model with the smallest AIC value fits the data better and, therefore, represents the best balance of goodness of fit and complexity. Finally, in supplementary analyses we test for an interaction between gender and COVID-19 factors to see whether the pandemic has affected Syrian refugees' mental health differently for males and females. --- Results Before moving to the results from our regression analyses, we report the findings from our rotated factor analysis used to derive our COVID-19 factors. Both the rotated factor analysis and the scree plot of the eigenvalues indicate that the COVID-19 items load on three factors: items assessing changes in social relationships loaded on a factor labelled 'COVID-19 social relationships' ; items assessing stress and concerns because of COVID-19 loaded on a factor labelled 'COVID-19 stress' ; and the single item assessing hope about the end of the pandemic constituted its own factor, labelled 'COVID-19 hope' . We report the full procedure used to derive our COVID-19 factor scores in Supplementary Appendix C. Our three COVID-19 factors were rescaled between 0 and 1 to make interpreting coefficients easier across models . Scores on the CESD-10 range from 0 to 30 , on the STAI-6 from 0 to 18 and on the PSS-4 from 0 to 16 . Our mental health variables were also rescaled between 0 and 1 for the same purpose. Table 1 presents the effects of COVID-19 factors on mental health. COVID-19 social relationships was positively associated with depression symptoms at time and negatively associated with perceived stress at time . The effects were substantive in size: a negative change in 0.1 point in COVID-19 social relationships measured on a 0 to 1 scale was related to an increase of more than one standard deviation in depression symptoms. Concerns about restrictions, living situation and financial problems because of COVID-19, i.e. COVID-19 stress , was positively related to all three mental health measures . The effects ranged from +0.24 to +0.41 and were substantive in size. For instance, a negative change of 0.1 point in COVID-19 stress was related to an increase of about one and a half standard deviations in stress and anxiety symptoms. Feelings of hopelessness about the end of the pandemic, i.e. COVID-19 hope was positively associated with both symptoms of depression at time and perceived stress at time . Except for a negative effect of previous changes in the quality of social relationships on stress symptoms, we found no evidence that COVID-19 factors at time influence scores on the CESD-10, STAI-6 and PSS-4 at time . Estimates for some sociodemographic variables reported meaningful effects on mental health. In particular, higher perception of Turkish society's negative attitude towards Syrian refugees was positively associated with stress symptoms, longer time spent in Istanbul was positively associated with depression symptoms and greater concern about stability of residential status was positively associated with both anxiety and stress symptoms. Unlike some previous research mentioned above, our data do not show any statistically significant association between gender and mental health. However, given gender differences in depression, in supplementary analyses we tested for an interaction effect between COVID-19 factorsat both time and and female gender. We fully report these additional analyses in Supplementary Appendix D because in all instances but one the interaction is statistically insignificant. The only exception is given by the interaction with COVID-19 hope which is positive and significant at least at P < 0.05 in all three models, suggesting that higher feelings of hopelessness about the end of the pandemic in the previous wave are associated with higher symptoms of CESD-10, STAI-6 and PSS-4 in the current wave among women. Table 2 examines the effects of mental health on COVID-19 factors. Full analyses with sociodemographic variables are presented in Supplementary Appendix E. Depressive symptoms at time were positively associated with all COVID-19 factors at time and effects ranged from +0.12 on COVID-19 social relationships to +0.25 on COVID-19 stress, namely, between about two-thirds of one standard deviation and one standard deviation in COVID-19 factors. Anxiety symptoms at time were positively associated with COVID-19 stress , namely, almost one standard deviation in COVID-19 stress. Moreover, stress symptoms at time were positively associated with both COVID-19 stress and COVID-19 hope , but were negatively associated with COVID-19 social relationships . Except for a positive effect of anxiety symptoms at time on COVID-19 stress , there was no evidence that mental health symptoms at time influenced COVID-19 factors at time . As mentioned earlier, to compare differences in the effects shown above, we use AIC. If the model in which a given mental health measure is the dependent variable has a smaller AIC than the model in which a given COVID-19 factor is the dependent variable, we can conclude that the former model fits the data better than the latter model. Indeed, this is the case for CESD-10 and STAI-6, where AIC is smaller in the analyses of the effects of COVID-19 factors on CSED-10 and STAI-6. For PSS-4, the model in which COVID-19 hope is the dependent variable has the smaller AIC. Thus, we can conclude that COVID-19 factors are better at predicting symptoms of depression and anxiety, whereas symptoms of stress are better at predicting hopelessness about the pandemic. AIC values are presented in Table 3. --- Discussion --- Main findings Although it is now well documented that the COVID-19 pandemic has had an adverse effect on psychiatric symptoms, research examining the impact of the pandemic on the mental health of refugees is still limited. Utilising a two-wave panel study data-set obtained throughout the summer of 2020, we documented an association between COVID-19 stressors and the mental health of Syrian refugees living in Istanbul. The present study is important in demonstrating that, consistent with other recent research examining the effects of the COVID-19 pandemic on mental health, 4,35 perceptions about COVID-19 policy responses are associated with levels of stress, depression and anxiety in refugees; further, changes in symptoms appear to influence perceptions of the pandemic. More specifically, we found that changes in the quality of social relationships, pandemic-related stress and feelings of hopelessness about the end of the pandemic were associated with depressive symptoms. In addition, the COVID-19 stress factor was significantly associated with levels of anxiety and perceived stress. Further, we found an association between levels of anxiety in the previous wave and the COVID-19 stress factor in the subsequent wave. This suggests that mental health symptoms, at least for anxiety, have an impact on pandemic-related stress. But this is the only instance in our data where we can conclude that mental illness symptoms affect COVID-19 stressors, as supported in analyses that we conducted using AIC . Finally, contrary to findings in the broader literature, we found only limited evidence of an effect of gender on COVID-19 factors, indicating that in our sample the pandemic-related stresses experienced by both males and females may have overridden possible gender differences. --- Interpretation of our findings The results of our study highlight important issues that merit further discussion. The first point involves the Syrian refugees' concerns about restrictions on leaving home, their living situation and financial problems because of COVID-19, and their resultant levels of anxiety. As noted earlier, Syrians' access to the Turkish labour market has been limited, confining refugees to informal employment. At the same time, the pandemic has inflicted disproportionate health and economic risks on those employed in informal jobs and has exacerbated their vulnerabilities. Many informal jobs provide essential services that involve interaction with other people, where it is more difficult to effectively implement social distancing measures, putting informal workers at high risk of contracting COVID-19. In addition, informal jobs are often excluded from the government's wage subsidy schemes and are not covered by the mitigation policies. Finally, the measures adopted to contain the economic effect of the pandemic place informal workers at higher risk of losing their jobs. For informal workers, job and income insecurity, coupled with a higher risk of contracting COVID-19, are likely to increase the refugees' vulnerability and adversely affect their mental health. 36 Financial stress is particularly important because of its links to the related housing problems of refugees in Turkey. Adequate housing is an issue of finding not only a physical shelter, but also a place that 'protects privacy, contributes to physical and psychological well-being and supports the development and social integration of its inhabitants'. 37,38 Thus, having adequate housing is considered an important social determinant of mental health by the WHO. 39 Unable to afford adequate housing, however, many refugees in Turkey live in poor and overcrowded flats. 40 Financial problems add further stress to the refugees' housing problems. Insecurity of tenure and the risk of losing their housing increases their vulnerability and adds to their anxiety. Another point that warrants discussion concerns the negative impact of the government's COVID-19 restriction measures on the quality of the refugees' social relationships with family, friends and with Turkish society. This is an important issue not only because it affects refugees' integration into Turkish society, but also because of its links with mental health. 41 Concepts such as integration, harmonisation, social cohesion and adaptation by refugees have been central to discussions about Syrians in Turkey. In the absence of a universal definition, integration is generally accepted as a dynamic and two-way process that requires participation of both the host society and immigrants/refugees. Researchers often emphasise strengthening of social relations, interactions and ties as important aspects of social cohesion and integration. 42 COVID-19 measures have taken away opportunities where the two communities met including schools, universities and non-governmental organisations . Given the further social distance between the two groups necessitated by these measures, this will have adverse effects on refugees' participation in the social, cultural and economic life of their community. As earlier studies showed, 43 lack of social integration can lead to increased stress and poor psychological well-being, aggravating refugees' mental health problems. The third point involves the implications of our findings for the trauma and life challenges experienced by Syrian refugees prior to the pandemic. The high levels of psychiatric symptoms among refugees are well documented in the literature. Wars and conflicts are often a life-changing trauma for those who are displaced. Researchers have found declines in mental well-being and, in particular, a rise in depression even in post-traumatic periods. 44 Indeed, investigators have reported that one-quarter to one-half of refugee adults have clinically significant levels of depression. 45 Studies focusing on refugees in Turkey also confirm this statistic: Syrian refugees in camps and schools have been found to exhibit high levels of anxiety and depression. 46,47 In Turkey, most refugees live outside of the camps, and some scholars posit that better mental health of refugees living in cities is the result of them having more job opportunities, alternative accommodation and additional societal support. 47 Our findings are consistent with this, showing increased anxiety and depression as job opportunities decrease and living standards deteriorate with the pandemic. The present study is also consistent with earlier research linking working and living conditions to mental well-being. --- Limitations We should note four limitations of this study. First, our panel dataset includes only two waves that were collected within a 2-month interval. Thus, although we can examine short-term effects of the pandemic on mental health, we do not yet understand the longerterm effects. Second, because we received funding for our project after COVID-19 had begun, we can only compare the effects on Syrian refugees' mental health between two periods within the first COVID-19 wave, but not before the pandemic. Third, our analyses are based on a representative sample of Syrian refugees living outside of camps; thus, we do not know whether our conclusions generalise to refugees housed in camps. Nevertheless, we can speculate that because refugees living outside of camps have easier access to the labour market, the effects of the outcomes of COVID-19 restrictions might be greater for this group. Finally, given space constraints, we could not include in our survey questions concerning worry about illness or death, experience of loss, worry about family members in the home country, or PTSD, all of which might be relevant to our study. --- Implications Despite these limitations, the present study is important in demonstrating that, consistent with recent research on the effects of COVID-19 on mental health 4 in unselected samples, the pandemic is having an adverse effect on levels of depression, anxiety and stress in Syrian refugees, and it will be important that they are provided with services to reduce what may be particularly debilitating consequences of COVID-19. In this regard, our findings have important implications for the support provided for Syrian refugees in Turkey. First, the Turkish government continues to receive huge sums to meet the needs of the Syrian refugees it hosts. The European Union is considering giving 3.5 billion euros for refugee funding to Turkey in addition to the 6 billion euros it has already committed to. 48 However, there is a need for more support directed towards refugees' mental health. In addition, although Syrian refugees have access to health services in Turkey, lack of information and accessibility may prevent them from making use of mental health services. Therefore, the national government should work with local actors to improve information sharing and accessibility of mental health services, and develop tailored psychosocial health interventions by increasing the number of adequately trained staff, which might help reduce stigma. 20,49 This requires the government to prioritise mental health in their refugee-related policies and funding programmes. Second, local and international civil society actors have been working with and for Syrian refugees living in camps and cities. 50 Over the years, their activities have facilitated refugees' access to healthcare, education, the labour market and, more recently, have supported intercommunal dialogue with NGOs conducting projects on refugees' mental well-being. M'zah and colleagues suggest that the provision of mental health services in non-medical settings may help reduce stigma. 20 Therefore, NGOs could integrate a mental health component into their ongoing and upcoming projects as an immediate response to alleviate the mental health impact of the pandemic. NGOs have stepped in with basic needs support for those refugees exposed to job and income losses prompted by the pandemic. This support should continue until the debilitating effects of the pandemic are over. At the same time, however, the uncertain life situation of refugees should be resolved and the process for entering formal employment should be eased to eliminate refugees' constant insecurity and fear of the future. The uncertainty keeps refugees from having a normal life and will continue to adversely affect their mental health. --- Data availability The data that support the findings of this study are available on request from the corresponding author, L.B. The data are not publicly available yet because of restrictions related to publication commitments of the project's research outputs. --- --- Declaration of interest None. --- Appendix
Mental disorders are currently the greatest global health burden. The coronavirus diseases 2019 (COVID-19) pandemic is having an adverse impact on people's mental health, particularly in vulnerable populations, such as refugees.The present study was designed to examine the association between COVID-19 and changes in mental health in Syrian refugees in Turkey.We conducted a two-wave panel survey of a representative sample of 302 of the estimated 500 000 Syrian refugees (ages 18 and older) living under humanitarian support in Istanbul (first wave between 9 and 15 July 2020 and the follow-up between 11 and 14 September 2020). We administered seven items from the CoRonavIruS Health Impact Survey in addition to one-context specific item about life changes because of COVID-19, and measures of depression (10-item Center for Epidemiologic Study Depression Scale, CESD-10), anxiety (6-item State-Trait Anxiety Inventory, STAI-6) and perceived stress (Perceived Stress Scale, PSS-4).A factor analysis yielded three COVID-19 factors, labelled 'social relationships', 'stress' and 'hope.' We conducted a series of cross-lag panel analyses to test associations between the COVID-19 factors and mental health. We found associations between all COVID-19 factors and CESD-10, between COVID-19 'stress' and STAI-6, and between COVID-19 'stress' and COVID-19 'hope' and PSS-4.Our measures of life changes because of the COVID-19 pandemic are associated with changes in the mental health of Syrian refugees living in Istanbul. It is therefore important that they are provided with services to reduce what may be particularly debilitating consequences of COVID-19.
Introduction Anaemia is a global public health problem that affects mainly young children and adult women. About 1.71 billion people, or 23% of the global population [1], and approximately one-third of the women in childbearing age [2] suffer from anaemia. Based on the level of anaemia as a public health concern, the World Health Organization ranks India third in severity . At the same time, neighbouring countries such as Bangladesh, Sri Lanka, and Nepal perform better than India in this ranking. The prevalence of anaemia in Bangladesh reduced from 50.3% in 1990 to 39.7% in 2015 [3], while during this period, the decline in anaemia was insignificant in the state of West Bengal of India [4]. India allocates 3.6 per cent of its Gross Domestic Product to public health [5], while the country suffers a 3% GDP loss due to the burden of Iron Deficiency Anaemia in children [6]. Anaemia in the reproductive age of women is defined as the haemoglobin level of less than 11 g per decilitre [7]. The deficiency of micronutrients like iron, zinc, vitamin B12, vitamin A, and folic acid is linked to inadequate nutrient consumption and is the primary predictor of anaemia [8][9][10][11][12][13]. In addition, large-scale studies have found that low socioeconomic status and lack of education are major determinants of anaemia in women [14][15][16]. Uneducated women have poor knowledge of the quality and nutritional content of the foods they consume [17]. Thus, women with lower socioeconomic status are prone to be undernourished and anaemic condition due to inadequate food consumption [18,19]. Moreover, unhygienic practices and a lack of improved drinking water also directly affect the bioavailability of the food consumed [20]. High fertility, physical work, parasite infections, and menstrual disorders are similarly responsible for anaemia in women [21,22]. Further, female sterilization and anaemia are strongly associated, though studies are limited in India and Bangladesh [23][24][25][26]. Anaemia is a leading factor in high maternal morbidity and mortality [27]. However, it also impacts development [6,28], being the causal factor of adverse birth outcomes, low birth weight and preterm birth [29], and cognitive impairment, depression [30][31][32] and work productivity loss [33]. Also, anaemia leads to 11% of Years Lived with Disability [34]. More than 1,15,000 maternal deaths and 5,91,000 perinatal deaths occur each year due to anaemia [35]. Anaemia Mukt Bharat was launched recently by the Government of India to reduce the prevalence of anaemia by 3% points yearly among children, adolescents, and women in the reproductive age from 2018 to 2022 [36]. However, over the past decade, a drop of mere 0.7 percentage points was experienced by women in West Bengal, indicating the failure of these targets [4]. At the same time, a yearly reduction in the prevalence of anaemia by 1.1 percentage points was observed in Bangladesh [3]. Therefore, the rationale for this research is to understand the factors explaining anaemia in two Bengals: West Bengal and Bangladesh. Also, interest lies in identifying the spatial clustering of anaemia in two neighbouring spaces. These two geographical areas are identical in ethnic, environmental and linguistic parameters; while the religious composition differs significantly. Bangladesh had a Muslim majority , while West Bengal had a Hindu majority . To our knowledge, there is no comparative study on predictors of anaemia among women of childbearing age in West Bengal and Bangladesh with a special emphasis on the religious composition. It is hypothesized that open defecation , women's sterilization , and food consumption patterns that are significantly different in these two places play a crucial role in explaining anaemia. Thus, it would be helpful for the policymakers to relook into the strategies to achieve the second goal of SDGs, that is, fighting against malnutrition, especially in limitedresource countries. --- Methods --- Data sources The present study used data from the fourth round of the National Family Health Survey , 2015-16 , and from the Bangladesh Demographic Health Survey, 2011 , for anaemia and associated risk factors. NFHS-4 was conducted from January 2015 to December 2016 across 36 states and union territories, including all the districts in West Bengal of India and provided information on various important Maternal and Child Health indicators. In the NFHS dataset, blood samples were collected from 17,093 out of 17,668 women. The haemoglobin concentration was measured using a battery-operated portable HemoCue Hb 201 + analyzer. The Bangladesh Demographic Survey was conducted from June to November 2011 and is the latest data set for Bangladesh, where information on anaemia is available. Blood samples were collected from children, men, and women -both pregnant and non-pregnant. One-third of households were selected for anaemia testing in Bangladesh. Since the recent BDHS-VII, 2017-18 does not provide information about anaemia, the most recent survey was used in the study, which provides data on anaemia. A two-stage stratified sampling design was adopted in both data sets mentioned above. Census enumeration areas or 'clusters' were selected as the primary sampling unit at the first stage of the sampling frame. In the second stage, households were randomly selected from the primary sampling units or 'clusters' of the sampling frame . --- Sample selection The study restricted the sample to two religious groups -Hindu and Muslim-focusing on non-pregnant women. It excluded pregnant women to avoid selection bias as food consumption and BMI indicators vary between pregnant and non-pregnant groups [38]. A total of 17,092 women participated in the survey in the Indian state of West Bengal. Among them, 660 pregnant women and 604 samples belonging to other religions were excluded. Hence, 15,756 samples were taken for the final analysis after excluding the missing data. In BDHS, though the total sample was 17,842 women aged 15-49, blood samples were collected for 5,983 women, of which 382 were identified as pregnant. We further excluded 32 samples belonging to other religious groups. The final sample was 5,276 women. --- Outcome variable The DHS provides the altitude haemoglobin level. The WHO cut-off was followed to estimate anaemia among women. Anaemic women were defined as those who had less than 12 g/DL haemoglobin levels. For the analysis, anaemia was taken as a dichotomous variable, where 0 signifies not anaemic, and 1 denotes anaemic. --- Predictor variables The predictor variables were selected based on the previous studies and available variables in the dataset. Independent variables considered as covariates in this study were indicators of different levels of socioeconomic, demographic variables, health status, and food consumption/security. As BDHS does not provide the food consumption variable, food security was considered as a proxy of household food availability. Variables considered for women were age, nutritional status, methodmix in contraceptive use, religious affiliation , and education. Age was categorized as 'below 20' , '20-24' , '25-29' and '30 & above' . Body Mass Index was categorised into 'thin' , 'normal' , and 'overweight or Obese' . Educational qualification was considered in the model as a proxy for the social status of the household. As women's reproductive behaviour can influence their health outcomes, the current contraceptive method uses and the number of children born to a woman were taken into account. The contraceptive methods was categorized into 'no use' , 'female sterilization' , 'pill/injection/intrauterine device ' , and 'other' . The wealth quintile represents a household's economic condition; it was calculated on standardized wealth scores given in the DHS datasets. The residential/community environment was captured through the region, urban-rural residence and ownership of agricultural land and open defecation. The sources of drinking water were classified as 'groundwater' , 'distributed water' , and 'other' . The World Food Summit in 1996 defined food security as 'when all people, at all times, have physical and economic access to sufficient safe and nutritious food to meet their dietary needs and food preferences for a healthy and active life' [39]. The food security index was calculated following the methodology of Chowdhury et al., 2018 [40]. Food consumption indicators of NFHS were categorized as 'never' , 'daily, 'weekly/occasionally' , etc., based on the type of food and its consumption frequency. This study categorized the administrative divisions of West Bengal and Bangladesh as 'regions' . --- Statistical analysis The outcome measure, anaemia, was categorized into '1' if a woman had anaemia and '0' otherwise. A Chi-square test was used to mark the significance levels of the unadjusted covariate's effect on anaemia. Ordinary kriging, a linear geo-statistical interpolation technique, was used to prepare the spatial prevalence map of anaemia for creating cluster-level maps. For making these maps, the GPS coordinates were obtained from the DHS survey, with the rural clusters displaced 5 kms and urban clusters displaced 2 kms to maintain confidentiality. Univariate Moran's I statistics technique was applied to identify the hot spots and the cold spots of anaemia among women in Bangladesh and West Bengal. Bivariate Moran's I is a spatial technique that measures the autocorrelation to assess an independent variable's influence on a dependent variable. Bivariate Moran's I was employed using the cluster points of DHS data to understand the spatial association between anaemia and groundwater. Furthermore, a multiple logistic regression analysis was applied to capture the differences in the covariate's effect on the outcome measure on two spatial units separately and then on the pooled data. In the pooled data, analysis was made with interaction terms involving the dummy of two spatial units and the religion categories. The analyses were adjusted for sampling weight. We checked multicollinearity using the Variance Inflation Factor for each independent variable included in the logistic regression. We did not find evidence of multi-collinearity as the VIF value was less than 2. Statistical analysis was performed using STATA version 14.1, while the spatial analysis was done using ArcMap version 10.3 and GeoDa version 1.18. --- Results --- Sample characteristics The sample of West Bengal encompasses more adolescents compared to the sample of Bangladesh . The use of contraceptives differed between the two places, with sterilization of women being five times more prevalent in West Bengal , while more than a double proportion of women were using hormonal methods in Bangladesh . Twenty-four per cent of women in West Bengal had no children compared to 8% in Bangladesh. On the other hand, nearly a half and one-fourth of the women respectively in Bangladesh and West Bengal had more than two children. Bangladesh had more illiterate women than West Bengal . However, it is interesting to note that Bangladesh had an improved households' wealth score and the proportion of rich households was higher in Bangladesh , while that of poor households was more in West Bengal . It was further observed that the people of West Bengal practiced open defecation about 10 times more than those of Bangladesh. Thirty-five per cent of all households in Bangladesh suffered from food insecurity. Ownership of agricultural land was higher in Bangladesh compared to West Bengal . Sixtyfive per cent of women in Bangladesh and 75% of women in West Bengal lived in rural areas. About half of the women consumed meat or chicken daily or weekly, while 56% of women never or occasionally consumed any fruit in West Bengal. --- Prevalence of anaemia: West Bengal vs Bangladesh The prevalence of anaemia was 64% in West Bengal and 41% in Bangladesh . The hotspot analysis shows that the anaemia among women was highly concentrated in the western districts , followed by Dakshin Dinajpur and the north-eastern part of West Bengal . In Bangladesh, the southern Rangpur, northern Dhaka and some parts of Barisal had a high concentration of anaemia . The severity of anaemia was distinctly more in different parts of West Bengal than in Bangladesh. Table 2 exhibits the unadjusted percentage distribution of anaemia by different socioeconomic, demographic, health and food consumption covariates. Younger women , thin women , women with 2 + ever-born children , illiterate women, Hindu, poor, and rural women, women practices open defecation, and women with agricultural land suffered more from anaemia. This observation was evident in both the spatial units of comparison. In Bangladesh, households with food security were less likely to suffer from anaemia, whereas in West Bengal, better chicken or meat consumption reduced anaemia's prevalence significantly. In Bangladesh, 46% of women, who had 2 + children ever born , were anaemic. A similar finding was observed among women of West Bengal, with the highest anaemia rate of 66% among women with 2 + CEB compared to those with no CEB . The poor-rich gap in the prevalence of anaemia was equally prevalent in both places. In Bangladesh, the difference was about 12 percentage points, whereas, in West Bengal, it was 9 percentage points. The pattern of the gap in the anaemic population by education and by practicing versus not practicing open defecation group was similar in both countries. --- Determinants of anaemia: West Bengal vs Bangladesh A logistic regression model investigates the determinants of anaemia among women in West Bengal and Bangladesh . The adjusted odds ratio shows that adolescent women had a higher probability of having anaemia compared to women in the age group of 30 and above in West Bengal. However, such a finding was not observed for Bangladesh. In West Bengal as well as Bangladesh, thin women were more likely to be anaemic than women with a normal weight . It was observed that contraceptive methods like pill, injection and IUD were significantly protective determinants of anaemia than the female sterilization in both the study areas. In West Bengal, the chances of having anaemia increased with the growing number of children a woman had. Compared to higher educated women, illiterate or primary educated women were significantly more associated with anaemia in West Bengal . Amongst Hindus, the odds of anaemia were greater compared to Muslims in West Bengal, with the magnitude being much higher in Bangladesh . Women who belonged to the poor wealth quintile had a larger probability of being anaemic than those who were rich . In West Bengal, women who lived in rural areas and practiced open defecation were more likely to be anaemic than their counterparts, i.e., women who lived in urban areas and practiced better defecation systems. Women who had their own agricultural land suffered more from anaemia compared to those who did not own any agricultural land in both places under the study. Using groundwater for drinking was a major risk factor for anaemia in both Bengals compared to women who used distributed water as the source of drinking water. The paper emphasized the spatial correlation between drinking groundwater and anaemia. The bivariate LISA map of our study shows a significant spatial correlation between drinking groundwater and anaemia in both Bengals . In Bangladesh, women who lacked food security had a higher odds of anaemia . In West Bengal, women who never or weekly consumed fruits and those who never consumed chicken or meat were more likely to be anaemic. The women residing in Barisal, Rajshahi, Rangpur, and Dhaka had significantly higher chances of being anaemic in Bangladesh; in West Bengal, women in the Medinipur region had a higher likelihood of having anaemia. Table 4 shows religious effects on the chances of anaemia. The highest odds of anaemia were observed among Hindu women in both Bengals . However, within the 'Hindu' group, the probability of being anaemic was higher in West Bengal. Even among Muslims, anaemia was more prevalent in West Bengal than in Bangladesh . --- Discussion The comparative study on anaemia outcomes among women was carried out to identify the potential determinants in two resource-limited areas, i.e., West Bengal and Bangladesh, where similar ethnic and environmental parameters can be found. This natural control of the population may help us identify some unique features explaining women's anaemia. The results may help in developing strategies and attaining SDG 2. Using the large-scale Demographic Health Surveys of both the areas under study, the research reveals some pertinent results that needs policy attention. First, higher prevalence of anaemia in West Bengal, India against Bangladesh is well observed. The hotspots of the prevalence of anaemia were concentrated in the Dakshin Dinajpur district, West and North-Eastern West Bengal. In Bangladesh, people who are living in the surrounding areas of Jamuna and Padma rivers are highly exposed to arsenic-contaminated groundwater, that is well observed in our study [41][42][43]. Second, the concentration of anaemia in these above mentioned areas can be corroborated well with ground water use and poverty. Using groundwater for drinking was found to be a significant risk factor for anaemia in this study. Previous researches have indicated that fluorosis contamination in groundwater is heavily concentrated, as is poverty in the western part of West Bengal [44][45][46]. Most people of the Dakshin Dinajpur district drink groundwater where arsenic is highly concentrated [4]. Further, the tribal population living in the West and North-Eastern parts of West Bengal are more vulnerable to anaemia due to thalassemia and nutrient deficiency [47][48][49]. West Bengal and neighbouring Bangladesh have the highest reported population of exposure to inorganic arsenic. In 2015, more than 50 million people in West Bengal and 77 million people in Bangladesh were exposed to more than 0.01 mg of arsenic in drinking water [43]. Among 23 districts of West Bengal, nine districts encompassing about 38,861 sq. km were identified as highly affected by arsenic [50]. Previous studies have demonstrated that exposure to arsenic and fluoride-contaminated drinking water increases the risk of anaemia [42,45,51]. In countries like India and Bangladesh, most people drink water directly collected from tube wells or wells without purification, increasing the risk of drinking contaminated water [52]. In line with the hypothesis, the bivariate LISA map of our study shows a significant spatial correlation between using groundwater and anaemia. The spatial clustering can be observed in the areas with highly contaminated groundwater identified by the previous studies [43,[53][54][55][56]. Thus, the study concludes that most people who collect drinking water from tube wells or wells in highly groundwater-contaminated areas experience more anaemia. However, an indepth study is necessary to strengthen this finding. Third, open defecation is taking a significant role in risk of anaemia in West. of nutrients from food [57,58]. Government of India launched the 'Swachh Bharat Mission' in 2014, intending to make India open defecation-free by building new toilets in every household [59]. Moreover, six SDG envisages achieving access to adequate and equitable sanitation and hygiene for all and ending open defecation [60]. Nevertheless, people prefer open defecation even after having a latrine, as reported by the SQUAT survey [61]. Thus, increasing awareness regarding the adverse impact of open defecation is necessary to bring a change in the behaviour of people. Fourth, being undernourished and belonging to the low wealth quintile are major contributors to anaemia in both the places. At the same time, the household wealth quintile is an independent factor of undernourishment due to inadequate food consumption [62]. Malnutrition may not be directly linked to anaemia, however, it increases the likelihood having a weaker immune system that leads various health problems such as parasitic infections or chronic inflammation [63]. These are responsible for reducing the level of haemoglobin in the blood [64]. Fifth, in West Bengal, those who regularly consume fruits, chicken or meat are less likely to be anaemic. A poor woman being unable to afford micronutrientrich food makes her more vulnerable to anaemia than a woman from a wealthy family. There is also evidence that poor households are unable to utilize health care facilities due to the lack of accessibility and affordability [65,66]. Thus, there is a possibility of diseases remaining untreated that can cause anaemia. Sixth, households with agricultural land indicate more anaemia in our study. The explanations for such finding are complex and need further investigation. Needless to mention, women's participation is rapidly increasing in the agricultural sector. Women in India represent 33% of the working population in agriculture and 48% of independent farmers [67]. In Bangladesh, 50% of women are engaged in the agricultural sector [68]. In lower-and middle-income countries women's participation in agriculture negatively impacted their nutritional status due to the time trade-offs with food preparation in the household [69], which supports the findings of the present study. Seventh, less education and a higher number of children trigger the risk of anaemia in West Bengal. In Bangladesh, education and rural stay have no distinct differential effect on anaemia, indicating a similar distribution of non-anaemic women across age, education and place of residence. Initially, the pregnant and lactating women and preschool children between 1 and 5 years were targeted by the anaemia schemes in India. Now, such schemes are expanded and all children above six months to adults are being covered. Due to the large targeted population, a huge iniquity and problems related to the scheme's coverage exists [70]. Thus, better monitoring is needed to improve the performance of the nutritional anaemia programme in both countries. This is true that women with higher education have higher chances of utilizing health care facilities than non-educated women and obtaining preventive and remedial services for diseases that improve anaemia levels [65,71]. The probability of receiving IFA tablets too increases with increasing educational levels as educated women are aware of the importance of iron to the human body [72,73]. In the present study, giving three or more births was found to be a great risk for anaemia, as supported by previous studies [26,74]. Eighth, adolescents have a greater probability of being anaemic as compared to the older women in West Bengal, while in Bangladesh, we observed no such age effect. Calorie, protein and mineral requirements increase significantly during adolescence due to the rapid somatic growth and increase the red blood cell mass [75]. Moreover, adolescents in South East Asian countries don't consume sufficient iron-rich foods [76]. Higher demand for iron is imposed on a woman due to the iron loss during menstruation [77]. A previous study from India noted that about 30% of adolescent girls reported abundant blood loss during their menstrual period, making it a major contributor to anaemia [78]. Dietary modification through spreading awareness or nutritional schemes like mid-day meals along with preventive supplementation is required to improve the haemoglobin status of the adolescents. Ninth, using IUD, pill, or injection reduces chances of anaemia, which is in line with previous studies [79,80]. Does it mean that sterilization prevalent in West Bengal is taking a toll on women in terms of anaemia? Studies are limited in this direction. Using hormonal methods gives women better haemoglobin concentration as compared to sterilization [80]. A past study proved that hormonal and IUD methods protect women from menstrual blood loss [81]. In contrast, female sterilization carries the risk of women developing polymenorrhagia, hypermenorrhoea, menorrhagia and an irregular menstrual cycle that triggers anaemia. In West Bengal, around 29% of women had undergone female sterilization in 2015-16 [4], whereas only 5% of women were sterilized in Bangladesh in 2017-18 [82]. Therefore, supporting couples and individuals to decide freely and responsibly on contraceptive use could explain the lower prevalence of anaemia in Bangladesh. The current approach of family planning programs in India focuses on addressing unmet needs, while female sterilization remains in high demand [83]. In this context, Bangladesh has drastically declined female sterilization by promoting basked of choices in modern Significant level; *p < 0.10, **p < 0.05, ***p < 0.01 a Other category of Contraceptive use; condom, male sterilization, rhythm/periodic abstinence, withdrawal, lactation amenorrhea, female condom and foam or jelly contraceptive methods [84]. Thus, a wider choice of contraception is essential in West Bengal. Tenth, in West Bengal, it is observed that consuming meat or chicken and fruits were prospective habits of anaemia. Previous studies observed that high fruit consumption not only improves micronutrient concentration but also significantly protects from chronic diseases [19,85]. Therefore, those who consume more fruit are more likely to have increased iron absorption, which reduces their risk of anaemia [86]. Here, religion plays a significant role in the selection of foods. We found that Hindu women were more vulnerable to anaemia in both Bengals. About 30% of women are vegetarian in India [4]. A study in India found that the incidence of undernutrition and iron deficiency anaemia is higher among Hindu women than their Muslim counterparts [87]. Also, the vegetarian diet was found to be a factor responsible for developing an iron deficiency. Consuming meat helps to improve haemoglobin [88]. In contrast to India, 90% of the population of Bangladesh belongs to the Muslim religion, and they consume non-vegetarian foods. People of Bangladesh consume 11.96 g/ day/person of animal protein [89], which is almost double than that in India [89,90]. There is a vitamin B12 deficiency in 51% of pregnant Hindu women in India [91]. However, in comparison with Muslims, higher proportions of Hindus in both places practice open defecation and female sterilization methods . Interestingly, Hindus are more anaemic in both the study regions, and women of West Bengal are more anaemic, irrespective of religion, compared to the women of Bangladesh in the interaction model. It proves that area-specific intervention could address anaemia by considering the religious backdrop. Encouraging a diversified protein and micronutrient diet might be a great strategy to supply the essential nutrients, especially for vegetarians. These shreds of evidence might partly explain the prevalence gap of anaemia among women in West Bengal and Bangladesh. --- Limitations The study has some limitations. Wealth categories are relative; NFHS and BDHS calculated the wealth quintiles as per the amenities of a household in the given country. Also, the nutritional deficiencies related to anaemia may coexist with abnormal haemoglobin variants, complicating their diagnosis. DHS does not capture clinical, haematological, and biochemical diagnoses of anaemia. Further, the study compared the 6 th round of BDHS, 2011 and 4th round of NFHS, 2015-16, as the information of haemoglobin was not available in the recent dataset of BDHS 2017-18. The study also overlooked the possibility that a woman may remain a nonuser of contraception because she suffers from anaemia. Similarly, lower BMI could be due to anaemic conditions. --- Conclusions By identifying some unique explanatory factors, the study makes an important contribution to the literature on anaemia among women. To our knowledge, this is the first empirical study that compares two naturally controlled spaces to find out the potential risk factors of anaemia among women in West Bengal and Bangladesh using nationally representative surveys. Use of a particular method of contraception, food consumption pattern/food security, water and sanitation well explain the difference in the prevalence of anaemia in West Bengal and Bangladesh, besides the usual determinants like wealth, education and fertility. Bangladesh, due to its unique advantages in some of the factors mentioned above, like better sanitation and hormonal contraception, is more efficient in tackling women's anaemia than West Bengal, though the former experience higher regional variation in anaemia. Promoting knowledge and access to nutrient-rich foods grown in the local environment is necessary to tackle anaemia. Further, awareness of anaemia and associated health problems can encourage women to choose suitable methods of contraception, small family norm, safe sanitation and safe drinking water use. The national focus is essential toward healthy food consumption, better economic condition and higher education for women. Policies must target the provision of safe drinking water and open defecationfree environment, especially in West Bengal and to create a secure food community mainly in Bangladesh to reduce anaemia. --- --- --- --- Additional file 1: Table --- --- --- Competing interests The authors declare no competing interests among them. • fast, convenient online submission • thorough peer review by experienced researchers in your field --- • rapid publication on acceptance • support for research data, including large and complex data types • gold Open Access which fosters wider collaboration and increased citations maximum visibility for your research: over 100M website views per year --- • At BMC, research is always in progress. --- Learn more biomedcentral.com/submissions Ready to submit your research Ready to submit your research ? Choose BMC and benefit from: ? Choose BMC and benefit from: ---
Background: Anaemia among women is a public health problem with associated adverse outcomes for mother and child. This study investigates the determinants of women's anaemia in two Bengals; West Bengal (a province of India) and Bangladesh. These two spaces are inhabitated by Bengali speaking population since historic past. The study argues that open defecation, contraceptive method use and food consumption patterns are playing crucial role in explaining anaemia. Methods: Using non-pregnant women belonging to different religious groups, we analyzed a total of 21,032 women aged 15-49 from the nationally representative cross-sectional surveys, i.e., Bangladesh Demographic Health Survey (BDHS-VI, 2011) and National Family Health Survey (NFHS round 4, 2015-16). We performed spatial, bivariate and logistic regression analyses to unfold the important risk factors of anaemia in two Bengals.The prevalence of anaemia was 64% in West Bengal and 41% in Bangladesh. The significant risk factors explaining anaemia were use of sterilization, vegetarian diet and open defecation. Further, women who used groundwater (tube well or well) for drinking suffered more from anaemia. Also, younger women, poor, less educated and having more children were highly likely to be anaemic. The study also indicates that those who frequently consumed non-vegetarian items and fruits in West Bengal and experienced household food security in Bangladesh were less prone to be anaemic. Hindus of West Bengal, followed by Muslims of that state and then Hindus of Bangladesh were at the higher risk of anaemia compared to Muslims of Bangladesh, indicating the stronger role of space over religion in addressing anaemia. Unlike West Bengal, Bangladesh observed distinct regional differences in women's anaemia.Propagating the choices of contraception mainly Pill/ injection/IUDs and making the availability of iron rich food along with a favourable community environment in terms of safe drinking water and improved sanitation besides better education and economic condition can help to tackle anaemia in limited-resource areas.
INTRODUCTION Investigators have utilized digital tools such as social media, electronic health records , and global positioning system data for a variety of purposes in research. Social media technologies have been used to recruit participants, collect and mine data, and conduct interventions . Research topics on this subject have varied including infectious diseases, substance use, cancer, mental health, and chronic conditions . For the most part, participant reception and acceptance of social media use by academic researchers have been positive, though concerns about privacy and anonymity, risk of harm, and effects on vulnerable populations were present . Studies examining the acceptance of EHR use indicate that people perceive it will improve their healthcare . Similar to social media data, participants' surveyed have expressed concerns such as privacy and that the information would be used to discriminate against them . Despite concerns about security and privacy loss, study participants have generally agreed that benefits such as improved medical care and quality of care for them and others outweighed the risks . With respect to location data investigators have used GPS in research in various ways including examining children and adult mobility . Feasibility and acceptance studies, even among marginalized populations, indicate that participants may be highly comfortable with researchers tracking their location . However, similar to social media data and EHR, participants have expressed concerns with privacy and confidentiality and risk of harm . Because of people's growing mistrust of science, the spread of misinformation, and the importance of incorporating proper ethical procedures into research , it is essential that researchers continue to assess public perceptions on and willingness to share digital data for use in public health. It is especially important to study this topic during and after the COVID-19 pandemic, as digital surveillance and outreach methods are increasingly being used. Among individuals with diagnosed medical conditions, this study aims to examine participants' social media use and comfort/concerns with sharing their data with health researchers. --- METHODS --- Recruitment Participants were recruited through Facebook advertisements or through referral from Moshemu.com, a website for posting research studies. Facebook advertisements ran from February through March of 2020. Interested individuals who clicked on the Facebook advertisements were routed to an online interest form for initial screening. Screening questions included contact information, age, medical diagnoses, type and frequency of social media use, and ownership of a smartphone. Research staff called participants to verify information and obtain informed consent. Moshemu website staff provided study research staff with a list of participants meeting eligibility criteria. Moshemu participants were emailed the study information sheet by study staff. Those who replied expressing interest in the study were called to verify information and obtain verbal consent. Eligibility criteria were adults 18 years old or older, living in the US, self-reported having been diagnosed by a physician with a medical condition, belonging to at least one social media platform, using social media at least twice a week, and owning a smartphone. All eligible participants were emailed a link to the online survey. The online survey took ∼15 min to complete and included items related to type of social media and other digital technology platforms used; frequency of use; comfort/perceptions of ethical views on sharing data related to these platforms, including EHR, social media, mobile app, and mobility/GPS data; as well as views about sharing these data with researchers and/or industry. Participants received $15 in online gift cards as compensation. --- Data Analysis Of the 163 respondents, 161 participants had completed the survey in full and were included in the analysis. Descriptive analysis characterized demographics and social media and smartphone use, as well as comfort level and concerns about sharing private information. Correlation analysis assessed associations between variables. All analyses were performed using SPSS v25. The study was approved by the University Institutional Review Board . --- RESULTS Participant demographics are shown in Table 1. Study participants were mostly female , White , and with a mean age of 36.31 years . Education and social media use were fairly distributed across the participant sample. The top three medical diagnoses were mental health , chronic pain , and autoimmune disease . Table 1 also shows participant behaviors and preferences on social media. The three most-frequently used social media platforms were Facebook , Instagram , and Twitter . The top three methods of messaging were Facebook Messenger , text messages/SMS , and iMessage . As depicted in Table 2, more than one third of participants reported being very comfortable sharing electronic health data for personalized healthcare and to help others . Fewer than 5% of participants were very uncomfortable sharing data for personalized healthcare or to help others . Similarly, more than one third of respondents reported being very comfortable sharing social media data for personalized healthcare and to help others , while fewer than 10% of participants were very uncomfortable with sharing data for personalized healthcare or to help others . Less than one third of participants felt comfortable sharing their GPS location and text message/smartphone data with researchers for both personalized health care and to help others , with almost a quarter of participants reportedly very uncomfortable sharing their GPS location and text message data for personalized healthcare or to help others . Participants were also asked about their concern with sharing social media and smartphone data with researchers. 19.3% of respondents were very concerned that providing social media data to researchers could harm them, 31.1% were somewhat concerned, 13.0% were neutral, 21.1% were concerned , and 15.5% were not at all concerned. A similar distribution was seen for participants' concern sharing smartphone data, including GPS location data, with researchers, with 23.0% very concerned, 24.8% were somewhat concerned, 11.8% were neutral, 23.6% were concerned , and 16.8% were not at all concerned. The top three reasons why participants were concerned about sharing their social media data to researchers a Participants were asked to select all items that applied to them. were disclosing private information , loss of privacy , and friends, family, or others might find out . As for sharing smartphone data, including GPS locations, the top three concerns were loss of privacy , disclosing private information , and friends, family, and others might find out . Less than 5% of participants reported having no concern sharing social media data or smartphone data . Participants' comfort level in sharing electronic health record data for personalized healthcare was highly correlated with sharing social media data and sharing GPS location and text message data . Participants' concern for sharing social media data was significantly associated with concerns about the following issues: disclosing private information, concerns that sharing data might affect health insurance coverage, concerns that sharing data might affect medical care, loss of privacy, and concern in sharing smartphone/GPS data . --- DISCUSSION This study examined social media use among individuals with a medical diagnosis as well as their comfort level and the concerns they have with sharing private data with researchers. Study results show that the majority of participants currently have a Facebook account, followed by Instagram and Twitter. Our result echoed findings by other investigators whose patient samples had a higher number of Facebook account over other social media platforms . Moreover, our study sample reported that they were generally comfortable sharing social media data to researchers. With respect to electronic health record, our results support findings by Weitzman et al. and Stevenson et al. . Which show comfort in sharing EHR records for research purposes. Results also indicate a correlation between research for personalized healthcare and to help others which suggest that regardless of who benefits from the information, individuals with a medical diagnosis are comfortable sharing data for science. However, EHR and social media data highly correlated with each other, but not with GPS location which could indicate that there are some data that participants are less comfortable sharing even if it benefits them. To our knowledge, this is the first study to report on the types of concern individuals with medical diagnosis have regarding sharing their GPS location and text message data with researchers. Although previous studies have shown acceptance of researchers collecting location data among individuals with a medical diagnosis , none have explored specific concerns regarding sharing GPS data for research purposes. Our findings indicate that more participants are very uncomfortable sharing their location and text message data with researchers than their EHR or social media data, with primary concerns centered around loss of privacy, disclosing private information, and that friends, family, and others may find out that they shared text messages with researchers. This discomfort may be due to the type of behavior they exhibit on social media vs. their smartphone. Participants reported liking a post, reading other's posts, or viewing others' videos and images more frequently than sharing their own content on social media . Smartphone data, such as location and text messages, are more private and personal compared to social media posts on public forums and they may not be comfortable sharing that to others. Interestingly, people do not appear to have consistent ethical views/perceptions about sharing digital data. In fact, individuals in this study were surveyed ∼1 month prior to the introduction of the COVID-19 pandemic in the United States. Approximately one month after the pandemic began, we followed up with participants from this study who reported being willing/very willing and unwilling/very unwilling to share their digital data for use in public health. Not surprisingly, those who were already willing to share data continued to be willing to share data. However, a surprising effect was that after the start of the pandemic, more than 75% of these participants who initially reported being unwilling to share their digital data for public health now reported being willing to share their data . This underscores the need for ongoing research on people's views on sharing digital data, as well as additional research into the factors that affect people's willingness and change over time. This study has limitations. Recruitment was limited to advertising on Facebook and a research website designed to recruit research participants, potentially leading to a biased sample. This could also impact generalization of findings as it might not generalize beyond individuals recruited in this manner. However, it is likely that this type of recruitment method would have broad reach given that ∼70% of people use Facebook1 , and because this type of online recruitment has become very standard in health research and is continues to grow as use of the internet continues to grow . Another limitation is the sample composition, which is mostly white women. There may be a sex and ethnic bias with regard to privacy issues regarding sharing data with researchers that were not explored given our sample. --- DATA AVAILABILITY STATEMENT The original contributions presented in the study are included in the article/supplementary materials, further inquiries can be directed to the corresponding authors. --- Ethics in Digital Tools for Public Health Furthermore, our sample also consisted of mostly participants under 56 years of age. It would be of interest to determine how comfortable elderly adults are with sharing their smartphone data given that 79% own and use them . Although the use of digital tools is well-established, investigators may want to emphasize the purpose of the research, who will have access to the data, and the safety protocols for privacy to assuage participant concerns. Outside of ethical considerations inherent in human research, transparency with participants about the nature of data collection and steps used to maximize privacy cannot be overstated. Likewise, acknowledging and understanding the concerns of participants could help shape research methodology and protocols. Individuals with medical diagnosis are comfortable sharing their data to assist researchers in developing personalized healthcare as well as to benefit others. Future research efforts could focus on marginalized populations, such as the transgender communities, to explore their specific concerns and comfort level sharing medical records, social media, and location data, and how they feel it would affect their privacy and medical care. Use of new technologies and privacy perspectives continue to evolve to prevent the growing COVID-19 pandemic, making this research especially timely and important to learn whether and how participants would be willing to share data to assist in controlling the pandemic. --- ETHICS STATEMENT The studies involving human participants were reviewed and approved by UCI IRB. The patients/participants consented online through the use of an online written information sheet. ---
Digital data, including social media, wearable device data, electronic health records, and internet search data, are increasingly being integrated into public health research and policy. Because of the current issues around public distrust of science and other ethical issues in public health research, it is essential that researchers conduct ongoing studies assessing people's perceptions around and willingness to share digital data. This study aims to examine participants' social media use and comfort sharing their data with health researchers. One hundred and sixty-one participants with medical conditions were recruited through social media paid advertisements and referral from a website, and invited to complete surveys on social media use and ethical perspectives on data sharing. Eligibility criteria were adults 18 years old or older, living in the US, self-reported having been diagnosed by a physician with a medical condition, belonging to at least one social media platform, using social media at least twice a week, and owning a smartphone. Study participants were mostly female, White, and with a mean age of 36.31 years. More than one third of participants reported being very comfortable sharing electronic health data and social media data for personalized healthcare and to help others. Findings suggest that participants are very uncomfortable sharing their location and text message data with researchers, with primary concerns centered around loss of privacy, disclosing private information, and that friends, family, and others may find out that they shared text messages with researchers. We discuss the implications of this research before and after the COVID-19 pandemic, along with its potential implications for future collection of digital data for public health.
INTRODUCTION With the explosive growth in its popularity, social networking sites like Facebook, Twitter, etc. have become an important medium for people to acquire and share information. People often tend to rely on these platforms for retrieving information about topics of their interest, and often make their decisions/opinions based on the acquired information. Social network sites are used in various tasks such as political campaigns [Gu et al. 2013;Stieglitz and Dang-Xuan 2013], social advertisement [Li and Shiu 2012], social aspects of emotions [Kim et al. 2012], expert finding [Pal and Counts 2011], viral marketing etc [Bi et al. 2014;Chen et al. 2010;Ding et al. 2013;Shi et al. 2018;Sun and Ng 2013] for influencing people. Different studies give credits the success of Arab spring [Wolfsfeld et al. 2013], Brazilian protests [Costa et al. 2015], Nirbhaya justice [Ahmed et al. 2017] etc. to social networking platforms. Social movements are believed to be highly influenced by social media sites, particularly in their organization and communication. Do social media posts about current events, news, and sociopolitical debates influence people's opinions? This is one of the core questions that many of the studies on social media data analysis are attempting to understand. Several studies [Kwak et al. 2010;Weeks et al. 2017] observe that social activities and interactions greatly effect people's day-to-day activities, lifestyle, reading habit etc. In regards to political and social issues, public policies, studies show different observations. Based on the finding in the study [Karakiza 2015], what people say or post on social media highly influence one's support on public policies. The same is also found to be true for political leaders while supporting or opposing a public policy. Study [Cha et al. 2010] also noted that the influence pattern is different for different countries and leaderships. However, has social media activities on a topic or news story ever changed one's opinion on a political issue? Study [Ziegler and Lausen 2005] analyzed propagation of trust and distrust on social networks, what can be considered the first paper in which sentiment propagation was studied. Interesting conclusions, like that positive and negative sentiments follow a different propagation pattern [Hillmann and Trier 2012], have been drawn from the various investigations on sentiments in social networks. Other works studied the correlation between emotions and information diffusion, finding that those messages emotionally charged were re-tweeted more often [Stieglitz and Dang-Xuan 2013], or investigated if the topic and the opinion of the user's contacts affect the own user's opinion [Tang and Fong 2013]. Motivated by the above studies, this paper investigates changing characteristics of people's opinion against an event on Twitter, and how do mass discussions/interactions influence in changing one's opinion against an event. We use the emotion of a user reflected in the post as the matrix to indicate his/her opinion in support/oppose a social event. This study focuses on emotion dynamics of a user while posting comments against an event/topic from three different social characteristics: i) emotional , ii) community , and iii) conversational . Identifying influential features can help us to understand factors causing people to change their opinions and in turn help agencies like advertisers and marketers to design more effective campaigns. This paper systematically explores user's changing characteristics of emotion over time, and attempts to find answer to the following three questions. • Do people change their opinion against an event/issue over time? • Which type of opinions against which type of events are more pron to change? • If people change their opinion, which of the social factors cause them to change their opinion? To investigate the above questions, we collect posts related to twelve different events from Twitter using Search-API. It consists of 12.91K users over a total of 17.65M tweets. Emotional states of the users reflected in the post are determined for each tweet using Russell's model of affect which correctly classifies the emotions expressed in over 90% of text messages [Hasan et al. 2014]. For each user against a topic/event, Temporal Emotional State Chain is prepared. Details of the data preparation is given in Section 3. All the experimental analysis are conducted over the collection of TESCs across different users and different events. From various experimental setups, this paper makes the following contributory observations. • We show that 63% of the user change their opinions and if an individual shares positive emotion against a topic, he is likely to stay in the same emotion state in his/her subsequent tweets. • Tweets coming from a member community have higher influential ability to an individual than the other sources like followers. • Retweeted tweets can also influence a user higher than the tweets received through hashtag, reply and mention. The rest of this paper is organized as follows. Section 2 review the related works. Section 3 describes how we collected the dataset and labeled by sentiments as well as a brief note on Russell's model. Section 4 shows the emotion transition on Twitter. Section 5 explains the process of understanding influence of incoming tweet. Section 6 explains about different characteristics during emotion state transition. The last section concludes our work. --- RELATED WORK This section briefly reviews the earlier literature that exploits different characteristics of opinion dynamics and measuring user influence in social media. In Twitter, the number of studies have been conducted on changing opinion and discussion on user influence. A number of researchers have examined how message content affects individual retweeting decisions. They show users can influence brand content diffusion via retweets [Araujo et al. 2017], the role of content influence on social media via retweets behavior [Zhang et al. 2017]. Authors in the study [O'Connor et al. 2010] measures of public opinion derived from polls with sentiment measured from analysis of text from the popular microblogging site Twitter. --- Social Behavioral Aspect Emotional contagion has an influence on individual and group-level communication behavior in terms of information coordination and sharing [Suh et al. 2010a]. In the same direction, [Ferrara and Yang 2015] conducted a study on the dynamics of emotional contagion using a random sample of Twitter users and measure the emotional valence of content the users are exposed to before posting their own tweets. A high level of cognitive involvement such as anger, anxiety, awe, or amusement might also trigger a high level of physiological arousal, whereby low arousal or deactivation is characterized by relaxation and high arousal or activation is characterized by activity [Berger 2011]. Social networking is a multidimensional concept where users share a different type of behavioral aspect [Stieglitz and Dang-Xuan 2013] over a topic. An individual emotion on behavioral concepts possible to utilize through social networks in viral marketing. In this part, we study different emotions transitions of a user shows in social networks and also a different type of emotion detection [Colneriĉ and Demsar 2018]. [Myers et al. 2012] represents a model in which information can reach a node via the links of the social network or through the influence of external sources. The model used to infer the quantify the external influences over time and describe how these influences affect information adoption. Compare with others study, we consider four regions which are based on 16 emotions of Russell's model of affect. This emotion model combined with two main dimensions in a 2D circular space. The emotion transition leads to find out how likely a user express their emotion after receiving a tweet responding. A study conducted by authors in [Kim et al. 2012] where they show social aspects of the user's emotion by using Plutchik's wheel model and also examine that the conversational partners can influence each others' emotions and topics. [Bollen et al. 2011] investigate collective public mood states derived from large-scale collections of daily Twitter posts over time. They analyze tweets by using two mood tracking tools, namely OpinionFinder and also 6 dimensions mood measures Google-Profile of Mood States . Similarly, [Amalanathan and Anouncia 2017] attempts to study the nine basic human emotions and their significance in various social network activities to determine the right strategies of marketing in e-business. --- Social Influential Characteristics Understanding influential factors is an important task to understand dynamics in user's opinion on social network. A comprehensive comparison of different influential factors on users' social dynamics is studied in [Cha et al. 2010]. A similar study is conducted by [Ye and Wu 2010] where they measure propagation patterns of tweet messages and social influence by following three metrics, i.e. follower, reply and retweet. [Peng et al. 2017] examined a set of different characteristics to understand user's dynamics and identify influential users on Twitter. [Kwak et al. 2010] study information diffusion pattern of topological features namely singleton, reply, mention and retweet. They also study the temporal behaviour of trending topics. Unlike above studies, [Kim et al. 2012] explores the affect of social and conversational characteristics of users on emotional dynamics. Specifically, they look into the social conversational features that lead to transition of emotion states within a discussion chain. [Shi et al. 2018] propose a theoretical framework to systematically investigate the determinants of individual dissemination behavior in a Twitter network. They found information related to topical preference and homophily value are most influential on individual dissemination behavior. From the above discussion, we observe that while a large number of studies have been conducted to study the community channel, not many of them study the relationship between the community channel with the emotional aspect of the tweets. Few studies [Cha et al. 2010;Kim et al. 2012] that have been conducted in this direction do not consider a very wide ranges of characteristics. This study in particular considers the effect of a wide ranges of community and conversational characteristics on the emotion dynamics of a user while posting their opinion. Our experiment is completely based on Twitter datasets and all the possible sources are accommodated into this analysis. A popular study [Cha et al. 2010] defined that the majority of the people are influenced by three important activities such as followers influence, retweets influence and mentions influence. Including these three sources of influence, our study also covers some more extra parameters of influences such as hashtag tweets, replies, member lists etc. Our finding shows that the member-list is one of the important community channels which shows more influential to the user and retweets is more influential characteristics among others. --- Social Influence Evaluation Measure Identifying influential users is an important aspect in social media related studies. Identifying influential users can aid in tasks like social or political campaigns or viral marketing etc. In this direction, [Zhang et al. 2017] study the influence of content as well as users on the rebroadcasting pattern of a message. They observe that along with the content of a message, the rebroadcasting of a message by a user is also dependent on other users and the relevance of the message to the user. A similar study was conducted by authors in [Araujo et al. 2017] where they study the influence of users in the diffusion of information in a Twitter network. [Weng et al. 2010] proposed TwitterRank algorithm, an extension of PageRank algorithm to find the influential users in a Twitter network for a given topic. [Kwak et al. 2010] propose different measures for ranking influential users and report a comparison among them. [Ding et al. 2015] proposed a novel random walk model to measure the users' influence. For measuring a user's influence, they take into account not only the follower network of the user but also the popularity of the tweets. A method for measuring user influence is also proposed in [Zhang et al. 2016]. This paper presents TrueTop, the first sybil-resilient system to measure the influence of Twitter users. ProfileRank, a random walk based method inspired by PageRank is proposed in [Silva et al. 2013] to find influential users and relevant content. Rather than finding influential users, [Saez-Trumper et al. 2012] propose a method to find trendsetters in information networks. Trendsetters are different from other influential users in that they need not necessarily be famous but are able to spread a new idea over a social network successfully. While all of the above studies have considered Twitter as the experimental framework, [Liakos et al. 2016] investigates the influence mechanisms in Pinterest social media platform. Another influence study conducted by [Nguyen et al. 2017], where author propose the computation of Influence Spectrum algorithm for seeking a set of influential people on several social networks such as NetHEPT, NetPHY, Epinions, DBLP and Twitter. Similarly, [Wang et al. 2018] define two influence maximization queries to track influential users over Twitter and Reddit datasets. Other than the community structure of a network, [Vardasbi et al. 2017] propose a linear-time shell decomposition method based on the layer structure to maximize the influence in large scale networks. Their method can explain the different behaviors of real networks and predict the saturation dynamics in the networks. --- DATA PREPARATION AND EMOTIONAL MODELING This section describes the experimental dataset used in this study. For our purpose of analyzing real-time events, we chronologically retrieved tweets through Twitter Search-API1 and created our own datasets. We collected tweets related to different events that contain a specific hashtag. Our objective is to analyze the sentiments derived within a conversation that occurs in Twitter and investigate how the emotions are changed dynamically across the users that take part in the conversation. Datasets are categorized based on different events happening in the world related to policy, movie, accident, terrorism and sport. We tried to address different types of topic to check whether the emotion of the user act differently or not. All the tweets were collected in the english language. This study considers twelve events/topics belonging to six different categories as shown in Table 1. Some of the hashtags representing the events/topics are manually identified. These Hashtags are further used to collect the related post. The collected tweets mainly contain the following information user information i.e., the user who posted the tweet tweet text type of tweet i.e., direct tweet, retweet, reply, quoted tweet time of posting the tweet. To study opinion dynamics, one should post at least two tweets. We therefore first identify users who have posted at least two tweets against a topic. The dataset consists of about 17.65 million tweets, and 69.36K number of users. Out of the total number of tweets, 72.83K number of tweets sent by 12.91K users and the rest of the tweets have been received by the same 12.91K users. Since our study focuses on the opinion dynamics of these users only, therefore we require users to have sent at least two tweets within a two-time frame. It means, out of total users, 12.91K users have posted at least two number of tweets. The description of the datasets are given below: • #Blackmoneydebate comprises the tweets of the user that are related to demonetization which started in India from November 10 till December 30, 2016. --- Data Pre-processing For each participating user, we extract and arrange the tweets posted by the user in the order of posting time. As mentioned above, we assign an emotional state to each of the selected tweets to enable us to investigate a user's emotion dynamics while participating in social discussions. The details of the data preparation are discussed below. 3.1.1 Russell's Model of Affect. We use the well known sixteen state Russell's circumflex model of affect [Feldman Barrett and Russell 1998] to estimate the state of emotion present in a given tweet2 . According to this model, every affective experience is defined by valence and arousal coordinate in the 2D circumflex shown in Figure 1. A numerical value for valence ranges from 1 to 9 and arousal ranges from 1 to 9 . The emotional state or sentiment label of a given entity has been formed according to its valence and arousal values. Figure 2 shown on the right-hand side are the more pleasant states ; on the left-hand side the more unpleasant ones . The upper half shows the more activated states , the lower half the more deactivated ones . To reduce the number of emotional states, we consider four quadrants defined in [Russell 1980] and named them as excitement , contentment , depression and distress . Excitement is a state with high positive affect , while contentment is a state with low negative affect . Similarly, distress is a state with high negative affect and depression is a state with low positive affect [Feldman Barrett and Russell 1998;Yik et al. 1999]. 3.1.2 Finding Emotional State of a Tweet. To determine the emotional state of a tweet using Russell's circumflex model, we first need to estimate the valence and arousal score of the tweet. The aim of sentiment extraction is to compile sentiment words. One of the most efficient approaches for this purpose is the dictionary-based approach. Dictionary-based approaches use dictionaries of emotional words which are associated with a sentiment score. To estimate the valence and arousal score of a tweet, we use the ANEW dictionary of affect [Bradley and Lang 2010]. The new version of the Affective Norms for English Words dictionary [Nielsen 2011] is being developed to provide the mean and standard deviation of normative emotional ratings for 2477 unique words in English. The word list of ANEW initiated from a set of obscene words as well as a few positive words. Later on, different slang words were included such as WTF, LOL and ROFL. The entries of this dictionary match by applying Porter word stemming and WordNet lemmatization. It also contains another less strongly-related dimension was called dominance. However, for the purpose of our experiment, we only concentrate on two primary dimensions. The performance of the dictionary-based approach can be evaluated according to two aspects: 1) the number of emotional words covered by the dictionary and 2) the nature of sentiment score provided by the dictionary. ANEW computes sentiment score with the valence and arousal values of the word, which range from 1 to 9. ANEW allows us to calculate a more accurate sentiment value which fits better our aim of having a bi-dimensional representation of sentiments as well as to measure the intensity of expressed sentiments. 3.1.3 Sentiment Scores Calculation. We show an example of a tweet message that comprises three emotional words that exist in the ANEW dictionary along with their valences and arousal values. Hazirah Afifah @AzieFifa . The average sentiment score of a tweet message d is calculated with the valence and arousal of the stem words of d that appear in the ANEW dictionary . Then, the sentiment score of a user u is calculated with the score of his/her tweet messages and we associate the corresponding sentiment label S u . The sentiment score of a user is calculated as the average emotional value of all the tweets sent by the user. For example, if we amalgamate the three words Good, job and proud of the above message d, the result of the weighted average formula for the valence and arousal is X d = 7.30 and Y d = 5.41, respectively. We then use the mean points to determine the emotional state in the Russell's circumflex model, i.e., the coordinate falls in the excitement region . In a given tweet, more than one emotional word may be present. Like in [Naskar et al. 2016], we use the formula defined in the equation 1 to determine the overall emotional state of a tweet. X = N i=1 µ i σ i N i=1 1 σ i where X is the mean value of valence , N is the total number of emotional words within the message, µ is the word's mean value of valence and σ is the word's standard deviation of valence . --- Temporal Emotional State Chain This section describes formation of a Temporal Emotional State Chain . Our presumption is that a person's emotion depends on his/her personal opinion and the past history s/he received from neighbors by following different emotions, popularity and characteristics of messages. The Temporal Emotional State Chain is the sequence of outgoing and incoming tweets within two time frame. Every participating user's data is defined by the sequence of outgoing and incoming tweets arranged in the order of posting time. Outgoing tweets are those tweets posted by the target user about the topic under consideration. Whereas the incoming tweets are those tweets posted by other users about target topic, and are received by the user through one of the following : hashtag, mention, reply, retweet, following-list, member-list, other-list. We use the following terminologies to describe the chain formation. • User : User u is the current user for which we want to analyse the temporal emotional state chain. • Incoming mention : If a tweet is posted by another user with @u, then this tweet is an incoming mention tweet to user u. • Incoming retweet : A quoted retweet with @u is referred to as incoming retweet for user u. • Incoming reply : An incoming reply to a user u is direct reply to u's post. • Incoming hashtag : A tweet bearing the same hashtag as that of u's tweet is the incoming hashtag for u. • Incoming member-list : Any user u of a group post a tweet and correspondingly another user post another tweet from the same group, we refer to this tweet as coming from incoming member-list . • Incoming following-list : The user u who is following someone and list of tweets bearing the same hashtag seen by followee , we refer to these tweets as coming from incoming following-list . • Incoming other-list : Any user u who is mentioned by someone but not associated with followee or member list, we refer to as a incoming other-list . In TESC, we wanted to register the message that causes the reaction of a user and, at the same time, whether the user reacts to this message or not. Consequently, we needed to know the message received by the user and the possible message sent by the user. More specifically, we consider the time at which tweets were posted. Given a user u, we estimate the incoming tweets that the user u has received between two consecutive tweets posted by u. The time of the two consecutive tweets sent by a user u is referred to as t 0 and t 1 , and the received messages of the tweets that were posted at a time between t 0 and t 1 . Given a user u and a topic #h, a typical temporal tweet chain is defined by the following tuple chain, where ↓ denotes incoming and ↑ denotes the outgoing tweets. < u, #h >→ < .., ↓ m c t 0-1 >, ↑ m t 0 , <↓ m c t 0+1 , .. >, ↑ m t 1 , <↓ m c t 1+1 , ... >, ↑ m t 2 , ... where c ∈ {inH , inRT , inR, inM, inF L, inML, inOL}. When the user u posts his first tweet at t 0 on topic #h, public discussion on the topic #h might have already taken place. It is denoted by the tuple ↓ m c t 0-i , i = 1, 2, .. and c ∈ {inH , inRT , inR, inM, inF L, inML, inOL}. Similarly, incoming tweets between the user's tweet ↑ m t k and ↑ m t k +1 , is denoted by the tuple <↓ m c t k +0 , ↓ m c t k +1 , .. >. An example is also shown in Fig 3. The emotional state of a tweet in a temporal tweet chain is determined using Russell's circumflex model of affect as described in section 3.1.2. If R j , j ∈ 1, 2, 3, 4 denotes one of the four emotional state for a given tweet, the above temporal tweet chain can be transformed into the following temporal emotional state chain. < u, #h >→ < .., ↓ R I nM j,t 0-1 >, ↑ R j,t 0 , <↓ R I nH j,t 0+1 , .. >, ↑ R j,t 1 , <↓ R I nH j,t 1+1 , .. >, ↑ R j,t 2 , .. In all the experimental analysis reported in the subsequent section, we use the above temporal emotional state chain for each user. --- EMOTION TRANSITION ON TWITTER This section analyzes the characteristics of the emotional state transition of a user in his/her subsequent tweets against a topic. We focus on analyzing the following characteristics: transition probability of users emotional state change in subsequent tweets, likely initial state of user's emotion while posting a tweet against a topic, relationship between user's emotional state and nature of the topic, and participation of the user into the network conversation and their frequency while transit from one state to another. To perform the state transition of the user, a probabilistic sequence model, i.e. the Markov model is adopted. The simplest Markov model is the Markov chain [Andrieu et al. 2003]. According to the Markov model, the next state is solely chosen based on the current state. The transition probabilities control the way the hidden state at time t is chosen given the hidden state at time t -1. The set of transition probabilities for transitions from any given state must sum to 1. In this study, emotion states of users are likewise labeled with Russell's regions S = R1, R2, R3 and R3. The process starts in one of these states and moves successively from one state to another. Each move is called a step. If the chain is currently in state s i , then it moves to state s j at the next step with a probability denoted by p i j , and this probability does not depend upon which states the chain was in before the current state. The probabilities p i j are called transition probabilities. The process can remain in the state it is in, and this occurs with probability p ii . Let ⟨R1⟩ is a current emotion state of the tweets sent by the user at t, then next move can be towards ⟨R2⟩, ⟨R3⟩ or ⟨R4⟩ or this transition can remain in the ⟨R1⟩. However, the emotional state of the user can start with any of these four states. Table 2. Agreement and disagreement by all topics with average transition in Figure 4. P 11 considers self transition with high positive emotion, i.e., R1, P i j considers transition from self state to other states, P considers from others state to R1 and π i considers initial state. #UCLFinal Sport √ √ √ √ #SyriaGasAttack TA × × √ × #StockholmAttack TA × × #Trumpregrets Politics √ √ √ √ Figure 4 shows average transition probability from one emotion state to another over the topics in different categories. First, Figure 4 shows the macro average transition probabilities over all topics. It is clearly evident that if a user is in a state with highly positive emotion R1, the probability of staying in the same state in the subsequent tweets from the same user is higher than that of the highly negative emotion state R4 . Further, it can be also seen that if a user makes a transition from one state to another, the user is more likely to move toward the state with highly positive emotion as compared to other states . Interestingly, R1 has got the highest initial transition probability. It means when a random user posts his/her opinion on a random topic, s is likely to start with highly positive emotion state. However, for the topics like Terror Attack, the observations deviate from the above average pattern. The above observation may be biased by the nature of the topics/events that we consider in the experimental dataset. Users' emotional states may depend on the nature of the topic under consideration. To understand the topic dependent characteristics, we further investigate topic-wise transition probability as follows. • For majority of the topics except in Terror Attack category, like in average case, a user in a highly positive emotional state is likely to continue in the same state with higher probability as compared to that of the highly negative emotional state . • The topics in Terror Attack category show slightly different characteristics where probabilities of a user staying in the highly positive emotion state and highly negative emotion state are comparable. The probability of staying in R4 is even slightly higher than that of R1. • Another interesting observation for the topics related to a terror attack is that when users make state transitions, the probabilities of moving towards both R1 and R4 are also comparable. • For the topics related to Policy, in the majority of the cases users continue to stay in the earlier state • In the majority of the cases, users in states R2 and R3 are more pron to take the transition to other states than that of R1 and R4. Further, users in R3 are more pron to change state than the users in other states. • Unlike other topics, for the topics Terror Attack category, the initial probability is quite high for region R4. Table 2 summarizes agreement and disagreement of all the topics with that of the observation on average. It clearly shows that except for topics related to terror attacks, the majority of the cases agree with the average observations over all topics. Further, Figure 6 shows the number of times the users have changed their emotion state. We see that, for all the topics, the majority of the users change their emotion state against a topic only once. Comparatively, a very small number of users change their emotion state more than once for the same topic. Further, it is observed that 63% of users change his/her emotion state at least once against a topic. Users in emotion state R3 has the highest likelihood of changing state with a probability of 32%. --- UNDERSTANDING INFLUENCE OF INCOMING TWEETS On Twitter user receives messages from other users through various channels like mention, reply, member-list, follower-list, etc. From the studies [Cha et al. 2010], it is noted that the user's opinion is often influenced by the incoming messages he receives. In this section, we attempt to understand the influential characteristics of different channels over the user's opinion by estimating the probability of the incoming emotion state coming through a channel agreeing with the user emotion state present in his post. As for example, given that emotion state R1 of the user and majority of the tweets that the user received, what is the likelihood that the user carrying the majority on an emotion state R1. In this section, we examine three types of social features; incoming tweets with emotion state , incoming tweets only from community , and incoming tweets only through conversation . From the first features, we attempt to understand, if majority opinion can influence an individual's opinion. The second features try to understand if an individual's opinion can be biased by the opinions coming from the group/community that he belongs to. Lastly, we investigate if responses from the general public on previous posts of an individual influence the individual. We systematically explore the above questions by exploiting the dataset that we prepare in section 3. --- Can majority opinions influence individual's opinion? To answer this, we examine distribution of the emotion states over all the incoming tweets that an individual receive before he posts his next tweet, and check if the emotion state in his post agrees with any of the emotions in the incoming tweets. To systematically investigate the influential characteristics of the incoming message, we intend to understand the following sub-questions? 5.1.1 When an individual posts an opinion, how likely does his emotion state agree with that of any of the incoming messages? To answer this question, whenever a user post a tweet, we check in how many cases his emotion state matches with the emotion state of the incoming tweets he receives. Table 3 shows the probability of an individual's emotion state when he posts a tweet not matching with the emotion state of the incoming message across different topics. When an individual posts a tweet, if the emotion state of his tweet is matching with the emotion state of any of the incoming tweet then we refer to it as Matching, otherwise UnMatching. The last row of the Table 3 shows the percentage of UnMatching posts for each topic. It clearly shows that except two out of twelve topics, the percentage of UnMatching posts is higher than that of the Matching posts. Across all topics, 64.5% of the cases, user's posts do not agree with any of the incoming tweet that he receives. It indicates that majority of the user's opinion does not depend on the incoming opinion. In rows , it further shows the probability of UnMatching, if user posts a tweet with emotion state R i , i = 1, 2, 3, 4 i.e., Pr = P r P r P r . It shows that user has higher chances of Matching when he posts a message with positive emotion is smaller than that of R2,R3, and R4). Similarly, chances of UnMatching is higher when he posts with low positive or high negative emotion state . These observations are true for majority of the topics. --- If individual's emotion state matches with incoming emotion, does he agree with majority? To answer this question, we further estimate the probability of user emotion state matching with the majority emotion state of the tweets that user receives. Table ?? shows the probability of matching with the majority emotion state. In the table, M i denotes i t h majority emotion states i.e., 1 st , 2 nd , 3 r d , and 4 th majority. An entry in R i row and M j column in Table ?? is the probability that user posts a tweet with emotion R i and the emotion state of M j is also R i i.e., Pr = R i ) where e is the emotion state of the user's outgoing tweet m. The row with total average in Table ?? column shows the probability of agreeing with M i , i = 1, 2, 3, 4 if user's outgoing post has an agreement with an incoming tweet over all topics across different emotion state. It shows that probability of agreeing with M 1 is higher than that of M 2 , M 3 and M 4 . It means that if the user's emotion state in the tweet that he posted has an agreement with the emotion state of some of the incoming tweets that he received, it is likely to agree with the dominant emotion state among all the tweets he receives. Further, the Pr column in Table ?? shows the probability of a user posting a comment/tweet with the emotion state R i . It shows that in majority of the cases user posts tweets with positive emotion R 1 irrespective of the topics. Overall, 48.3% percent of the tweets are in R 1 . Interestingly, even for the events like SyriaGasAttack or StockholmAttacks, majority of the tweets are with positive emotion i.e., 43.2% for SyriaGasAttack and 49.1% for StockholmAttacks. For different emotion states, it is observed that when a user posts a tweet with R1, it mostly agrees with dominant emotion in the incoming tweets i.e., M 1 . However, this is not the case when a user posts a tweet with other emotion states . For example, when a user posts a tweet with R3 emotion state, it agrees mostly with either M 3 or M 4 . It indicates that a significant number of users do not get influenced by what he receives. --- Remarks. Coming back to our earlier question i.e., can majority opinions influence individual's opinion? From the above observations in Table ?? i.e., emotion state of a significant number of posts do not agree with the dominant emotion indicates that influential ability of social propaganda on the social network is questionable. --- Which community channel is more influential? In the above section, we have considered all the incoming messages irrespective of the type of channels through which a user receives the messages. However, as indicated in the studies [Cha et al. 2010], different channels may have a different influential pattern. In this section, we investigate the influential characteristics of different channels over the individual opinion. Table ?? shows the probability of agreement with the dominant emotion state in each of the community channel namely member-list , following-list and other-list . An entry in R i row and ML column in Table ?? is the probability that user posts a tweet with emotion R i and majority of the tweets coming from ML have emotion state R i , i.e., percentage of agreement with the dominant state in ML. Similarly, entries at F L and OL represent the percentage of agreement with their respective dominant state. It is evident from Table ??, ML has the highest probability of agreement as compared to F L and OL for all the emotion state R i , i = 1, 2, 3, 4. It means that message coming from ML has a higher potential for influencing users than the tweets coming from F L and OL. From the rows with total average in Table ??, it is observed that ML has 76% of agreements, whereas F L has only 22%. An interesting observation is that, though ML dominates F L for almost all the topics, the topics like BlackMoneyDebate, Brexit and BadmintonRio2016 have comparable distribution between ML and F L. This is due to the fact that popular tweets propagate multiple times from the source by retweeting throughout the network. A study [Watts and Dodds 2007] indicates that retweeting is a powerful mechanism in the social network where a group of users re-post the same tweet. --- Which conversational channel is more influential? In the previous section, it is observed that tweets coming from ML has higher potential of influencing user's opinion. Further, tweets might be coming through different conversational channels like hashtags , retweet , mention and reply . In this section, we further investigate influential characteristics of these conversational ?? shows the probability of agreement with the dominant emotion state in each of the above conversational channel. An entry in R i row and conversational channel in Table ?? is the probability that user posts a tweet with emotion R i and majority of the tweets coming from the channel also have emotion state R i . In almost all the cases over all the topics, RT dominants H, R and M. It means that tweets coming from RT have higher potential for influencing user's opinion than the tweets coming from others . Similar observations have also been reported in the study [Suh et al. 2010b]. Among H , R and M, H has higher potential. From the row with total average in Table ??, it is observed that RT contributes in 81% of the agreements, H contributes in 12%, and rest from M and R. --- CHARACTERISTICS OF INCOMING TWEETS TOWARDS STATE TRANSITION In section 4, we observe that 63% of users change their opinions towards a topic at least once. This section investigates the distribution of the incoming tweets that an individual receives at the time of changing his/her emotion state while posting a tweet against a topic. It will help us to understand possible causal influence from different channels through which an individual receives incoming tweets. Like in section 5, this section also considers the same three types of cases; whole incoming tweets, community channels and conversational channels. --- State Transition Vs Incoming dominant emotion Why does an individual change his opinion from his/her earlier emotion state against a topic? Has it been influenced by the emotion state of the majority opinion? To answer these questions, we study the distribution of the emotion state of all the incoming tweets that an individual receives before posting his/her next tweet with a different emotion state . Figure 7 shows the distribution of the emotion state of the incoming tweets across different dominant emotion states for each possible state transition. In Figure 7, the emotion transitions of a user is represented as R i → R j . For each R i → R j transition, we have shown its agreement with the distribution of the incoming emotion state. A bar chart with M k against a state transition R i → R j represents the number of the cases in which the emotion state changes from R i to R j , and emotion state of the k th majority incoming tweet is R j . A user's agreement with 1 st majority i.e., M 1 at the time of state transition potentially reflects possible influenced of changing state from the dominant incoming emotion. Similarly, a disagreement with the dominant emotion state at the time of changing the state of a user may also indicate a user's ability to make his/her own opinion . Figure 7 shows two interesting observations. Whenever users change his emotion state to extreme positive from any other state, it always has an agreement with the majority i.e., R i → R 1 , i 1. However, for any other changes where R i → R j , j 1, users agreement with M 1 is very low. It potentially means that sharing positive emotion is more general, and sharing negative emotion is more personal. It is interesting to see that transition to extreme negative has agreement mostly with 2 nd and 3 r d dominant emotions, not with the majority. Figure 7 shows that when users change their emotion state from R4 → R1 and R1 → R4, the percentage of agreements with dominant incoming emotion are 96% and 6% respectively. We can also see that the percentage of agreement with dominant incoming emotion while the transition from low positive R3 to high positive R1 is higher than that of R1 to R3 . From the above observations, it is evident that when a user changes his/her emotion state to non-positive states , the user tends to share personal opinion. How large is this proportion? In our dataset, 40% of the state transitions do not agree with M 1 and 41% of these transitions belong to a non-positive state transition. Further, how likely a user who had an agreement with the majority tends to change his/her state? It is observed from the dataset that in 2% of the cases a user tends to change his/her state from agreement to disagreement with the M 1 i.e., R i → R j , R i = M 1 , R j M 1 . It shows a significant proportion of the users are not influenced by incoming emotions. In the previous section, we have investigated over entire incoming tweets irrespective of the channels through which they receive the incoming tweets. In this section, we study the emotion distribution of the incoming tweets with respect to community channels i.e., member list, following, and others. Like in section 6.1, we estimate the probability of user emotion state matching with a different channel through he receives during emotion transition. We calculate the total average probability of agreeing with the different channels over all topics in different categories. In Figure 8, the emotion transition refers to R i → R j , where i, j = 1, 2, 3, 4 and for each R i → R j transitions, we have shown its agreement with majority for each community channel i.e., ML for member list, F L for following and OL for others. Each bar corresponding to a channel for a given transition R i → R j represents the percentage of its emotional agreement with the dominant emotional state in each channel i.e., the dominant emotion state is R j . Figure 8 shows that if an individual changes their emotion state from one region to another, the average majority agreement of the member-list channel is always higher than other channels . It is true for all the R 1 → R j , i j pairs. From this observation, it is evident that ML has maximum contribution in causing the state change. Interestingly emotion agreement with tweets coming from other channels is negligible. It shows that users are mostly influenced by tweets coming from either member list and following. Between member-list and following-list, member-list significantly dominants the following-list. --- Which conversational characteristics is more influential during emotion state transition? Individuals also receive tweets through conversational characteristics like Re-tweet, Hashtag, Reply and Mention. Which one of these is more influential in causing state transition? To acknowledge the above question, we investigate of distribution of dominant emotion states over these channels in Figure 9. We calculate the total average probability of agreeing with different conversational characteristics over all topics in different categories. Like above, each bar in Figure 9 shows the percentage of the instances of agreement with the majority in each characteristic against different possible state transition R i → R j , i j. It is evident from the figure that if an individual changes their emotion state from one region to another, then the retweet contribute the most with about 81% on average over all transitions. Further, Hashtags contribute about 10%. The contribution from the reply and mention are negligible. --- CONCLUSION This paper analyzes the emotion dynamics of users while posting public opinion through Twitter. This study has considered a dataset consisting of 17.65 million tweets with about 69.36k users over 12 different topics. From this dataset, emotion dynamics of 12.91k users who have posted at least two tweets have been studied. Analysis has been investigated from three different perspectives; the user's emotion transition, the influence of the emotion of public opinion on an individual's opinion, social parameters causing a change in an individual's opinion. First, we observe that 63% of the user change their opinion against a topic. People who share positive emotion against topics are likely to stay in the same emotional state in his/her subsequent tweets. Users in the highly negative state have the highest probability of changing state. If users change their emotional state, the probability of changing towards the highly positive state is higher than the probability of changing towards the highly negative state. It is observed that tweets coming from the member community have higher influential capability than the tweets coming from the follower community and other sources. Further, it is also observed that retweeted tweets can influence users higher than hashtag, reply and mention. In order to investigate systematically, we perform three different experiments over several categorical social topics/events on Twitter. First, we perform emotion state transition over entire conversation. By focusing on user emotion transition helps others to find someone's indisputable interest on the topic in future. From the transition, we infer that people shown positive opinion into their conversation except terrorism attack topics. We also infer that at the initial stage people shows high positive emotion and while continuing their conversation, most people going towards high positive direction. Second, we perform an analysis to understand influential characteristics of different channels over user's opinion by estimating of the incoming emotion state coming through a channel. From this analysis, we infer emotion state of a significant number of post do not influence with the dominant emotion on social network. Finally, we investigate the influential characteristics towards state transition by approaching three types of cases . From this investigation, we infer that majority people agree with positive emotion when users change their emotion state from negative to positive. As a result, it is significant that majority people of state transition potentially reflects possible influenced of changing state from the dominant incoming emotion.
Recently, social media has been considered as the fastest medium of information broadcasting and sharing. Considering the wide ranges of applications such as viral marketing, political campaigns, social advertisement, etc., a study on influencing characteristics of users or tweets have attracted several researchers. It is observed from various studies that influential messages or users create a high impact on a social ecosystem. In this study, we assume that public opinion on a social issue on Twitter carries a certain degree of emotion, and there is an emotion flow underneath the Twitter network. In this paper, we investigate social dynamics of emotion present in user's opinion and attempt to understand (i) changing characteristics of user's emotion toward a social issue over time, (ii) influence of public emotions on individual's emotion, (iii) causing of changing opinion by social factors etc. We study user's emotion dynamics over a collection of 17.65 million tweets with 69.36K users and observe 63% of the users likely to change their emotional state against the topic into their subsequent tweets. Tweets coming from the member community have higher influencing capability to others than the other sources. It is also observed that retweet influences users more than hashtag, mention and reply.
Black women in the United States are at high risk of violence exposure , with prevalence rates of lifetime violence reported to be 43.7% . Violence victimization is a determinant of reproductive health problems , poor mental health , stress , and human immunodeficiency virus risk . Lifetime violence exposure may be a key factor contributing to health disparities among Black women; for instance, Black women with violence histories are especially susceptible to multiple health risks such as pregnancy complications, depression, post-traumatic stress disorder , physical or physiological symptoms of stress, and HIV . Co-occurring health problems are commonly found among survivors of violence in the United States and globally. For instance, a recent systematic review of literature in Africa reported that 30% of women were affected by intimate partner violence , HIV, and mental health problems concurrently . In a study of Black women from the United States and the U.S. Virgin Islands , severity of IPV was significantly associated with cooccurring mental health problems such as depression and PTSD . Thus, efforts toward working with survivors of violence or reducing violence should incorporate addressing these multiple health outcomes among Black women. Previous intervention studies have addressed factors such as violence, mental health, stress reduction, reproductive health, and HIV as separate issues. However, these factors are highly related and need a more comprehensive intervention approach. Since Black women are disproportionately burdened by violence and associated health concerns, comprehensive multi-component interventions that address their complex and co-occurring health needs may have greater impact on their overall health and well-being. Interventions that include one component and target one outcome do not account for multiple epidemics affecting Black survivors of violence. For instance, victimization-related distress in the form of PTSD increases the risk of other health problems such as depression and drug misuse . Poor mental health may further entrap women in abusive relationships and interfere with their ability to access services in the community . Violence exposure among women is associated with substance use and an increased risk of HIV infection, with HIV infection often influenced by the psychosocial sequelae of violent victimization . HIV infection in turn places women at higher risk of violence. Studies show HIV positive women in the United States experience violence at rates higher than the general population . Abused women are more at risk of contracting HIV or sexually transmitted infections due to the inability to negotiate condom use with their abuser. Because these multiple health issues are interrelated, interventions focusing on any one of these issues in isolation may be less effective than the integrated approach ; to date, this remains an open question. Some studies have reported effectiveness of single interventions for survivors. Few singlecomponent interventions for survivors of violence have shown improvement in some areas such as social support, improved quality of life , improvement in self-esteem, internal locus of control, perceived stress, and marital functioning . However, the interventions or the outcomes assessed did not address other health concerns that are common sequelae of violence exposure. Given the complexity of the multiple impacts of violence on women's health in general, and Black women in particular, multicomponent interventions may offer more promise for improving health and safety for women survivors of violence. To date, there has been no systematic assessment of such efforts. Multicomponent interventions, however, require more resources and are inherently more complex to deliver and sustain . In order to ensure appropriate allocation of efforts and resources for multicomponent interventions for survivors, research is needed to establish an evidence base for intervention components that are effective in improving multiple outcomes for survivors. We conducted a systematic literature search to identify the evidence base for multicomponent interventions for Black survivors of violence, particularly those with lifetime trauma histories. We defined a multicomponent intervention as an intervention with a combination of multiple components that addressed two or more physical health, mental health, or safety outcomes for Black survivors of violence. The components of an intervention are parts of the content of the intervention, such as psychoeducation; case management; skills training; cognitive behavioral therapy; safety planning; relaxation exercises; or any other aspect of the intervention that could improve outcomes for Black survivors of violence. In this review, we focused on Black women residents of the United States, which comprise a diverse group with family ties in other regions of the world such as Africa, West Indies, or the Caribbean. The systematic review was conducted according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines . The findings will be useful to identify gaps in existing literature and potential intervention components for a comprehensive multicomponent intervention for Black survivors of violence that addresses their multiple safety and health risks. --- Purpose of the Study In this article, we reviewed and synthesized literature a. To describe the characteristics and effectiveness of evidence-based, integrated multicomponent intervention strategies for Black women survivors of violence; and b. To determine the efficacy of various integrated multicomponent interventions strategies on the following individual outcomes for survivors of violence: violence reduction, reproductive health, reduced risk of HIV, reduced stress/ stress management, and improved mental health. --- Methods Searches were conducted by the first author on the following five electronic databases: the PubMed, CINAHL, PsychINFO, Academic Search Complete, and Embase. In the search process, the intervention-related terms such as multicomponent, multi-component, integrated, comprehensive, intervention, program, randomized controlled trial, and random controlled trial were combined using Boolean connector "OR." The violence-related terms such as "violence," "abuse," "assault," "trauma," "Intimate Partner Violence," "Spouse Abuse," "Domestic Violence," "Battered Women," "intimate partner violence," "spouse abuse," "spousal abuse," "abused spouse," "abused spouses," "battered women," "battered woman," and "domestic violence" were also combined using Boolean connector "OR." Further, using Boolean connector "OR," we combined race/ethnicity and gender-related term such as "African," "Black," "African Americans," "african american," "african americans," "black," "blacks," "female," "females," "woman," and "women." All the intervention-related terms, the violence-related terms, the race/ethnicity, and gender-related terms were combined using the Boolean connector "AND." The maximum number of articles identified that included African Americans or Africans in the sample through these combinations of search terms was 1,717. After removing duplicates , 970 titles and abstracts were scanned for inclusion and exclusion. This screening resulted in the identification of 92 potentially relevant articles for which full-text copies were retrieved and reviewed by the first author. Publications were excluded if the abstracts and titles did not indicate discussion of an intervention or a program or did not include any of the targeted outcomes or exclusively focused on men or children under 18 years of age. When the abstract could not be excluded based on content presented, the article was reviewed in full. The 92 full-text articles were then reviewed based on the prespecified inclusion and exclusion criteria and a final set of 16 articles was identified by the first author, in consultation with the second author for inclusion in the synthesis. Additional articles identified in the reference lists of the selected articles were part of the final set of articles reviewed . --- Inclusion Criteria The final articles for selection met the following inclusion criteria: evaluation study, report of original quantitative research, adult Black women 18 years or older, a multicomponent intervention designed to address two or more of the targeted outcomes for survivors of violence , studies conducted in the United States, included survivors of any form of violence, and published in English language. We did not limit the studies to particular settings or specific time periods. --- Exclusion Criteria Articles were eliminated if the intervention studies exclusively focused on men, focused on participants under the age of 18 years, evaluated an intervention with only one component , did not evaluate an intervention on the targeted outcomes , did not evaluate two or more of the targeted outcomes in combination for women, just described the protocol of the intervention, did not identify the sample as survivors of violence, did not clearly mention Black women being part of the sample, were conducted in non-U.S. settings, and were not published in English language. We also eliminated thesis that could not be accessed. The information collected was summarized in Table 1. All studies were qualitatively evaluated on the basis of their study design, cultural considerations, eligibility regarding violence, details on the intervention and control groups, representativeness of Black survivors, types of sites implementing the interventions, expertise of the facilitators, follow-up periods for outcomes assessment, attrition rates, the outcomes evaluated, and whether the intervention study reported positive outcomes. All included articles were assessed based on the abovementioned criteria by the first author. The two authors discussed the evaluation criteria and resolved any disagreement in the quality of the studies or the assessment method. --- Definition of Terms Survivors of violence-Survivors of violence included those women who experienced physical, sexual, or psychological abuse by anyone . Culturally informed or a culturally adapted intervention-The intervention was defined as culturally informed or culturally adapted if it used culturally specific materials or symbols , or if the development of the intervention entailed use of cultural theory or existing Black literature, or if formative work was conducted with Black women . Multicomponent intervention-A multicomponent intervention in this review was defined as an intervention with a combination of multiple intervention components that addressed two or more physical health, mental health, or safety outcomes for survivors of violence. --- Results This study identified 16 multicomponent intervention studies that included Black women survivors of violence and addressed at least one or more of the targeted health and safety outcomes commonly associated with violence experiences. The studies did not report on effects of separate components on our targeted health and safety outcomes. However, the studies reported on the effects of the full multicomponent intervention package on improvement in outcomes. Based on the characteristics of the components included in each intervention study that was efficacious in improving outcomes, it was determined that the components of the intervention targeting our multiple outcomes were efficacious. For instance, if a multicomponent intervention study reported improvement in mental health, the mental health component of the intervention was considered efficacious. Online Appendix displays studies evaluating multicomponent interventions for survivors of violence, while Table 1 presents a summary of the interventions including names of the interventions and significance of the targeted outcomes. Figure 2 outlines the studies and the sample sizes. To summarize, the results are organized by the aims of this systematic review: --- Characteristics and Effectiveness of Evidence-Based, Integrated Multicomponent Intervention Studies for Black Women Survivors of Violence Eleven studies within this review were randomized controlled trials , with a control group comprised of standard treatment or usual care. Three studies were quasiexperimental designs . The comparison sites delivered usual care services. One study reported pre-post comparison design and one was a nonrandomized trial . For studies that clearly reported follow-up periods, two studies evaluated effects of intervention at the end of treatment, one followed up participants 30 days postintervention, five followed participants from 3 to 6 months, and five up to 12 months. Only one study had a longer follow-up period of 24 months. The interventions that included future revictimization as an outcome for Black survivors of violence exclusively focused on intervening with IPV survivors, with only three studies reporting interventions or programs for survivors of lifetime physical and/or sexual abuse by any perpetrator in primary substance abuse treatment settings , the Trauma Recovery and Empowerment Model under WCDVS site, in a mental health setting , and Condensed Seeking Safety intervention in a residential chemical dependence program . The sample sizes for the studies ranged from 16 to 1,023 in the intervention groups and 18 to 983 in the control groups. The survivors of violence were those who reported experiencing physical, sexual, and psychological abuse by an intimate partner or other perpetrators, with the time frame of violence for inclusion ranging from past 90 days to lifetime. Among the targeted outcomes, most of the intervention studies were found to assess mental health, future revictimization, and HIV risk including substance abuse . Two studies targeted stress and one reproductive health. The combination of outcomes assessed were violence and mental health in six studies , violence, mental health, and HIV risk in one study , mental health and HIV risk in four studies , violence and HIV risk in two studies , stress and mental health in two studies Mittal et al., 2017). The follow-up periods of these interventions ranged from 1 week to 24 months postintervention. Two interventions reported reduction in IPV scores or lower likelihood of reabuse over the 6-month period. None of the studies reported outcomes that were sustained more than 6 months. The improvement in mental health outcomes were reported for WCDVS , In Clinic IPV Advocacy , Mindfulness-based Stress Reduction , TREM , Condensed Seeking Safety Intervention , RPRS , HOPE , DC-HOPE , Community-based Depression Care Program , Grady Nia , and intervention reported in Zlotinck et al. . In some studies, there was noted improvement in specific mental health symptoms but not all. For instance, in comparison to the control group, TREM participants showed significant reduction in anxiety symptoms but not in PTSD or global mental health severity . In WCDVS evaluation of program sites, there was significant heterogeneity in effect sizes across sites. The average weighted effect size for intervention group was significant for improved posttraumatic symptoms but not for overall mental health status at 6 months follow-up . In some studies, the impact of intervention was reported only for posttreatment , 30 days posttreatment , or 3 months posttreatment . With short follow-up periods, it was difficult to determine whether improvement in mental health outcomes was sustained over a long period of time. Stress reduction was reported in two multicomponent studies only . Similar to other outcomes, there were some methodological limitations. For instance, one study did not have a comparison group and the program effects were assessed at the end of intervention with no follow-up . Sexual and drug-related HIV risk was addressed in the following multicomponent interventions/ programs for survivors of violence: WCDVS , RPRS , SUPPORT , HIV/AIDS Risk Reduction , and Grady Nia . Grady Nia was focused on reducing maladaptive behaviors to cope and promoting adaptive coping strategies . It was not specifically designed to reduce HIV risk. The WCDVS program sites reported greater reduction in drug or alcohol use than the control sites . HIV/AIDS Risk Reduction intervention increased HIV knowledge and decreased drug or alcohol use among participants at the end of treatment . SUPPORT participants showed a significant decrease in frequency of unprotected sex and an increase in safer sex communications with partners. The increase in safer sex conversations with steady partners were also reported at 3 months follow-up . These interventions that reported improvement in overall outcomes had short follow-up periods. Overall, the multicomponent interventions reviewed addressed specific drug-related or sexual HIV risks but did not report reduced risk of HIV in all domains. For instance, in comparison to the control group, RPRS was more effective in reducing binge drinking and use of crack cocaine but not in the use of heroin or marijuana . It was not effective in addressing unprotected sex or condom use but was able to decrease engagement in multiple sexual relationships . These findings need to be considered in light of some noteworthy limitations. Some studies focusing on future revictimization had low response rates , with 22-66% of noncompleters of the intervention. For instance, in an evaluation study of a six-session intervention, 29% of the participants dropped out of the intervention after four or fewer sessions . With low retention rates and short follow-up periods, it was difficult to know whether the intervention effects were sustained over a long period of time. In an intervention evaluation study with a long follow-up period , only 30% of the participants completed all follow-up assessments . The retention rate was not reported in two studies . Only a few studies compared the baseline characteristics of those leaving the study or not participating in full sessions with those remaining. And very few interventions had more than 90% of participants who completed all follow-up sessions. Overall limitations of multicomponent intervention evaluation studies for survivors of violence in this review were small sample sizes, low response rate or low rate of return, inconsistent participants' attendance, use of self-reports, non-randomization of some interventions, potential for selection bias, no comparison group, and a lack of credible attention control. For an intervention evaluation, longer follow-up periods are needed to determine whether positive outcomes were sustained. However, most studies in this review had short follow-up periods of 6 months or less. Further, studies had limited generalizability due to exclusive focus on shelter-based samples or specific clinic-based samples . Moreover, lack of attention to contextual challenges survivors faced was another limiting factor. --- Efficacy of Integrated Multicomponent Intervention Strategies on Individual Outcomes Components of interventions that included future revictimization as an outcome-The common components of integrated interventions that targeted future revictimization were skill building in areas such as negotiation, boundary setting, communication, safety/self-protection, and effective coping with IPV. Some included education on cycle of abuse, consequences of abuse, IPV prevention education, warning signs of violent relationships or immediate danger, and making a safety plan. Interventions also provided linkage to support and services and focused on overall empowerment to improve quality of life. With the exception of TREM , all studies assessing future safety focused on IPV. The eligibility criteria for including women in the intervention trial was only IPV , both IPV and drug/alcohol use , IPV and sexual risk behavior , IPV and PTSD , or IPV as one of the risks . TREM participants had a history of physical and/or sexual abuse and a co-occurring mental health and substance abuse problem. The components of effective interventions were individualized needs assessment, safety planning, education, support, and referrals. Trauma education and emphasis on the importance of safety were particularly reported to be critical components of interventions for survivors. Other effective characteristics included cognitive behavioral individualized approaches focusing on addressing areas of dysfunction, immediate needs of safety, and self-care, and overall improvement in quality of life with future goal-setting for safety . With the exception of RPRS, the majority of studies reported improvement in overall IPV. It was unclear whether these components were effective for women with certain types of violence histories. The RPRS participants were more likely than control participants to report a decrease in minor physical or sexual IPV, minor and severe psychological IPV, but there were no significant differences between the groups on sexual IPV or injurious IPV outcomes . TREM, the only non-IPV intervention study, did not find significant differences between the intervention and control groups on exposure to interpersonal abuse . The interventions that had positive outcomes for IPV were delivered by an IPV advocate, or an expert with psychology/counseling, or social worker with prior experience working with traumatized populations. Thus, components of efficacious integrated IPV interventions are individualized need-based services with emphasis on safety, assessment of risk, coping skills to deal with trauma, linkage to community resources, and overall improvement in quality of life. Also important is the expertise of the person delivering the intervention and quality assurance of intervention implementation . Since the only intervention study that included non-IPV participants and assessed for overall exposure to violence as an outcome reported nonsignificance, additional studies are needed to establish evidence base for multicomponent interventions for Black survivors of violence, other than IPV. Components of interventions that were trauma-focused or included mental health as an outcome-Integrated interventions targeting mental health among survivors require multiple components and a combination of approaches based on individual needs, skill building in specific areas of needs including self-care, coping, self-management, and linking participants to community resources. Most integrated interventions efficacious in improving mental health focused on skill-building, self-care or self-management behaviors, linking participants to services based on their needs and education, using a combination of individual and group therapy approaches, with intervention duration ranging from 3 weeks to 6 months . With the exception of WCDVS program , all of the studies that reported improvement in mental health included only survivors of IPV . The two studies that included survivors of general physical and sexual abuse reported improvement in some mental health symptoms but not all . These group-based interventions using cognitive restructuring, providing coping skills training for trauma, or teaching alternate coping skills, group support to facilitate recovery were effective in reducing some mental health symptoms but were not effective for global mental health symptoms, PTSD, or overall trauma symptoms . One individual-based intervention using interpersonal psychotherapy approach, enhancing social support, and teaching self-management skills did not impact major depressive episode or PTSD during pregnancy but had larger effect in reducing PTSD from pregnancy to postpartum . Thus, some interventions were only efficacious in improving specific symptoms of mental health . In a study, there were no significant differences between the intervention and control groups in improved mental health. This was attributed to small sample size of 25 in the intervention and 25 in the control group since the attrition in both groups was unusually high. This was a shelter-based sample, and location of the intervention was reported as a possible factor in attrition rate because of the stigma associated with experiencing IPV . In some studies, shortening the sessions or the intervention did not result in overall trauma reduction or improving global mental health symptoms . Other researchers, however, recommended shortening number of sessions or duration of the intervention to accommodate the multiple demands on women's lives and potentially using technology to deliver some of the components . --- Components of interventions that included HIV risk as an outcome-The components of interventions reducing HIV risk behaviors among survivors included education on STDs, HIV/AIDs, healthy lifestyle, self-protection, and healthy relationships and teaching self-regulatory skills. Reducing drug-related HIV risk among survivors of violence needed integrated mental health counseling and trauma services in substance abuse programs, skill-building in adaptive coping styles to deal with trauma, strengths-based assessments, and need-based intervention plans . Almost all interventions included group-based sessions, ranging from 6 weeks to 10 weeks. With the exception of Condensed Seeking Safety Intervention , all multicomponent interventions addressing HIV risk focused on survivors of IPV . The Brief Motivational Interviewing intervention with telephone booster at 10 days was not effective in reducing drug/alcohol-related HIV risk of heavy drinking . The RPRS intervention including participants in substance abuse treatment program was successful in reducing use of specific drugs but not others and in reducing sexual HIV risk behavior of multiple sexual partners but not nonuse of condoms . The Condensed Seeking Safety intervention, which included survivors of general interpersonal abuse, only addressed drug-related HIV risk. The intervention was not found to be effective in reducing relapse 30 days after treatment ended . --- Components of interventions that included stress management as an outcome- The intervention that was successful in reducing stress among survivors used the MBSR protocol . The second intervention that has stress as one of the outcomes was a multicomponent depression care program including case management, education, self-management components, and linking participants to resources. However, there were no noted significant reductions in stress . Both these multicomponent interventions focused on survivors of IPV. --- Components of interventions that included reproductive health issues as outcomes-Only the DC-HOPE intervention study included a reproductive health component and was effective in improving pregnancy outcomes in terms of reduced preterm neonates. The intervention was an individualized intervention including individual counseling, safety behaviors, education on IPV, providing information about community resources, mood management of depression, increasing pleasurable activities, and increasing positive social interactions. The focus of this intervention was also survivors of IPV . --- Discussion This review examined research on multicomponent interventions that effectively addressed two or more widely known outcomes of violence reported among Black women . Components of multicomponent interventions were considered efficacious if they led to improvement in the targeted outcomes. For instance, if a multicomponent intervention study reported reduction in violence, the violence component of that intervention was considered efficacious for reducing violence. Only 11 studies were identified that used randomized control methods to evaluate efficacy of multicomponent interventions to address multiple outcomes among Black survivors of violence. Thus, the body of evidence on interventions for Black women survivors of violence that address their multiple health issues is minimal. The studies evaluated interventions that differed in content, format, settings, number of sessions offered, and inclusion criteria. The measures used to assess outcomes also differed across studies. Further, variations in target samples for intervention made it difficult to determine whether the components of interventions would be effective for all Black women survivors of violence. All studies included in the review used self-reports to assess outcomes, which is subject to recall and social desirability bias. Further, the follow-up assessment time periods were short. The outcomes of the interventions should be assessed following completion of the intervention and at multiple time points to capture both shortterm and long-term effects of intervention . Components of efficacious interventions for violence were risk assessments, safety plans, coping skills training, addressing survivors' concrete needs , providing linkage to community resources, and empowering survivors to improve overall quality of life. Almost all studies with violence reduction or future revictimization as one of the two outcomes focused on IPV, indicating a gap in evidence for interventions addressing other forms or multiple forms of violence among Black women. Only one intervention study mentioned that although women were recruited based on lifetime IPV, all participants had experienced multiple lifetime traumas across the lifespan. The MBSR intervention reduced stress and improved mental health outcomes for survivors . The study did not assess future revictimization as an outcome. . Efficacious interventions for mental health included components such as psychoeducation, skill-building exercises in specific areas , and linking participants to needed resources. Strategies used to reduce trauma-related distress were derived from empowerment and social cognitive theories and included gender-focused, Afrocentric empowering practices . Our research did not identify a trauma-focused intervention that addressed mental health among Black survivors of interpersonal abuse other than IPV. In another review, research testing trauma-focused interventions for other forms of abuse have shown effectiveness of certain types of cognitive and behavioral interventions in reducing depression, PTSD, and anxiety symptoms among survivors . These interventions, however, have been tested on primarily White samples. Evidence shows that while some trauma-focused interventions may be useful with certain populations, they may in fact increase symptoms in other groups of victims . Thus, additional research is needed to establish evidence for trauma-focused intervention components that would resonate with Black survivors of IPV and other forms of interpersonal abuse. Very few intervention studies provided information suggesting that they were culturally informed, infusing cultural values and strengths into interventions or accounting for contextual factors such as minority racial status, low socioeconomic status, and stressful life events. Four interventions had less than 50% of the Black women in the sample . Very few interventions exclusively focused on Black women and those too did not take into account diversity among these Black women or whether cultural background may be a moderating factor in interventions. Further, there was inadequate attention to multiple and interrelated lifetime causes of health and safety outcomes. The DC-HOPE intervention combined elements of social-ecological, transtheoretical model, and cognitive behavioral treatment to address multiple risks for poor reproductive health outcomes among Black women, but the intervention exclusively focused on pregnant Black women . Also, the study did not report any culturally specific components that were incorporated in the intervention. One study, evaluating the effects of Grady Nia , described the intervention as a culturally competent empowerment-based intervention for Black women. The authors highlighted the important role of culture in women's vulnerability to traumatic life experiences, subsequent reactions to traumatic events, and responses to trauma interventions --- Conclusion, Implications, and Limitations This review highlighted the need for establishing an evidence base for multicomponent interventions that target multiple health care and safety needs of Black survivors of violence. Although the majority of the interventions in the review had components that addressed trauma/mental health, this was not always reported in studies that focused on other health issues such as HIV risk or reproductive health among survivors. Addressing trauma symptoms has been shown to address multiple health and safety concerns among survivors such as sexual and drug-related HIV risk behaviors, and future revictimization . Multicomponent intervention studies and sample sizes. IG = intervention group; CG = control group. --- Supplementary Material Refer to Web version on PubMed Central for supplementary material. --- --- Sabri and Gielen Page 20 Table 1 Summary of Multicomponent Interventions. Trauma Violence Abuse. Author manuscript; available in PMC 2018 July 01. --- Authors
The epidemic of violence disproportionately affects women, including Black women. Black women survivors of violence have been found to face multiple safety and health issues such as depression, post-traumatic stress disorder, HIV, and poor reproductive health. Many health issues co-occur, and this co-occurrence can be associated with additional safety and health-related challenges for survivors. Consequently, there is a need for multicomponent interventions that are designed to concurrently address multiple health issues commonly faced by Black survivors of violence. This systematic review of literature determines the efficacy of various strategies used in the existing evidence-based multicomponent interventions on violence reduction, promotion of reproductive health, reduction in risk for HIV, reduction in levels of stress, and improvement in mental health. Sixteen intervention studies were identified. Examples of components found to be efficacious in the studies were safety planning for violence, skill building in self-care for mental health, education and self-regulatory skills for HIV, mindfulness-based stress reduction for reducing stress, and individual counseling for reproductive health. Although some strategies were found to be efficacious in improving outcomes for survivors, the limitations in designs and methods, and exclusive focus on intimate partner violence calls for more rigorous research for this population, particularly for Black survivors of all forms of violence. There is also need for culturally responsive multicomponent interventions that account for diversity among Black survivors.
Introduction --- Background and rationale The World Health Organization estimates that over 600 million people in Africa are impacted by Neglected Tropical Diseases [1][2][3]. And within Africa, nomadic pastoralists remain among those African populations with higher rates of morbidity and mortality for a number of preventable conditions [4][5][6]. Nomadic pastoralists have been of particular concern since the smallpox eradication program era in the late 1970s, the success of which relied on high levels of herd immunity [7]. Contemporary elimination and eradication programs in Africa additionally observe that individuals moving between localities may serve as potential disease reservoirs or vectors [4,[8][9][10][11]. Multidisciplinary efforts to optimize the health of humans, animals, and the environment have also demonstrated that these populations may be systematically missed by formal health care systems, owing to their mobility and systemic factors [12][13][14][15]. The demographic invisibility of nomadic pastoralist populations is particularly salient in light of the Sustainable Development Goal 2030 targets which require accurate denominator data to assess whether indicators are reached [16]. While cultural and logistical barriers to formal, allopathic health service uptake by nomadic pastoralists have been recognized in the published literature since at least 1928, operationalizing a definition of nomadic pastoralism that is both valid and robust enough for research purposes has proven elusive and has hindered research efforts [17]. Nomadism typically refers to the lifestyle of mobile communities lacking a fixed residence while pastoralism refers to the raising of livestock; nomadic pastoralism is a subset at the intersection of the broader categories of nomads and pastoralists, which emerges out of specific ecological, cultural, political, and economic conditions. Pastoral production is an adaptation to arid and semi-arid conditions, and mobility is, in turn, an often necessary response to the dynamic environmental conditions that influence the water and grazing resources critical to successful production. Although the cultures and social structures of nomadic pastoralist societies vary widely, they generally share subsistence patterns that revolve around communal land use. In Africa, agricultural livelihoods are rarely either purely pastoral or purely crop cultivation; they are more commonly a blend of the two, the continuum of which is shaped by ecosystem and culture [18]. Given this continuum, as well as localized ethnic and cultural differences, the terms nomadism, semi-nomadism, pastoralism, and mixed-methods livelihoods are frequently conflated by researchers, resulting in systematic measurement error in research related to nomadic pastoralism that impedes programmatic efforts as well as the trajectory of scientific inquiry in this area [19]. Synthesis of research findings is complicated not only by definitional discrepancies but also because the existing literature spans multiple disciplines. While research about nomadic pastoralism is more common among disciplines such as anthropology, sociology, and the veterinary and environmental sciences, many of the studies that focus specifically on health services uptake among these populations have been conducted using biomedical approaches typical of medicine and epidemiology [10]. Owing to differences in epistemology and methods, much of the biomedical literature features an outsider perspective that seeks to identify objective factors contributing to population health, versus the insider perspectives more typical in social science disciplines that seek to document the internal logic of nomadic pastoralists' beliefs, behaviors, and social structures. The biomedical literature has thus contributed to a "conventional wisdom" around the reasons for low uptake of formal sector health services among nomadic pastoralists focused on a limited set of factors that are often incompletely theorized or empirically measured. The most common of these tropes relate to "long distances" and narratives about lengthy and unpredictable migration patterns; the role of "cultural differences" and "poverty" in health-seeking behaviors and access to care; and "education level" affecting demand for services [20,21]. When these tropes persist in the absence of valid operational definitions and empirical measures that also address correlations and confounding, or in spite of empirical data to the contrary, there is a risk of drawing inaccurate conclusions and proposing ineffective solutions to increase nomadic pastoralists' health service uptake. Two previous peer-reviewed syntheses of this topic have been conducted, however neither were systematic [22,23]. To address this gap, we conducted a systematic review of determinants of health services uptake among nomadic pastoralists in Africa. We focused our review on Africa as a geography in which there are numerous nomadic pastoralist communities and in which "demographic invisibility" and low health service uptake among these communities has been identified as a concern for current disease eradication and elimination efforts and achievement of the SDGs [24]. On the basis of our results synthesis, we identify potential strategies to increase health services uptake and directions for future research. --- Methods --- Literature search strategy We conducted a systematic search of literature indexed in seven online journal databases using search terms related to health services uptake, nomadic, transhumant, or itinerant pastoralists, and limited to locations in continental Africa published on or before February 28, 2019 . The databases searched were Medline , Embase , Global Health , PsycINFO , Sociological Abstracts , Scopus, and African Index Medicus. The search terms were intentionally broad due to the lack of standardized language or medical subject heading terms related to nomadic pastoralists. We used no language or date restrictions in the search. --- Selection of studies The initial search identified 5647 papers, which was reduced to 4354 papers after removing duplicates . Of those papers, only the 833 titles and abstracts that included one or more of the keywords "nomadic", "transhumant", "itinerant" and/or "pastoralist" were evaluated for topical relevance by two reviewers to determine if they warranted full-text review. Conference abstracts, book chapters, papers that were not peerreviewed , papers that were clinically rather than population-health focused , or papers in which the sole study population was sedentary or non-human were excluded. On the basis of this assessment, a total of 195 full-text papers were retained for full review. The final review set included all original peer-reviewed papers that focused on the implementation or evaluation of an intervention to increase health services uptake or reported a study that identified, characterized, or assessed opportunities or strategies related to health services uptake in our target population. Given the dearth of research on nomadic pastoralists , we placed no restrictions on study design. A total of 102 papers met the inclusion criteria and were reviewed. --- Paper review All reviews were conducted using a standardized, piloted data abstraction form comprising 44 questions. Data were entered using the SurveyMonkey platform. Each paper was reviewed by two independent reviewers with discordant answers resolved by consensus. Papers written in French were reviewed by French-speaking reviewers . To account for the range of study types, we derived the indicators of study reporting-quality contained in our abstraction instrument based on the Strengthening the Reporting of Observational Studies in Epidemiology statement for reporting observational studies [25]. In addition to the STROBEderived elements facilitators and barriers to service uptake; and summaries of proposed interventions, strategies and recommendations related to increasing health service uptake [S1 PRISMA checklist, 26]. We classified study designs using Rothman and Greenland's definitions [27]. --- Data Analysis Abstracted data were exported from SurveyMonkey into Microsoft Excel 2016 for data management and cleaning. Descriptive quantitative analyses were conducted using IBM SPSS ver. 25 software. The authors reviewed responses from the open-ended questions pertaining to facilitators, barriers and strategies relating to uptake to identify salient, crosscutting themes using an iterative inductive coding method [28,29]. --- Results --- General characteristics of papers Geographic locations covered. Studies were conducted in 16 African countries, with the highest number of studies from Ethiopia , Kenya , Chad , Nigeria , and Tanzania . Ninety-eight percent of papers designated a specific geographic region within a country for the study. Nomadic pastoralist population characteristics. Within our sample, four principal labels were used for the study populations: "nomadic" , "pastoralist" , "semi-nomadic pastoralist" , "nomadic-pastoralist" ; five variants on these terms had a frequency less than 10, with some papers using multiple terms. In 53 papers, the pastoralists' movement patterns were characterized as: nomadic : demonstrating non-fixed migration patterns; transhumant : demonstrating consistent or fixed seasonal migration patterns along welldefined routes; and semi-nomadic/semi-sedentary : living in sedentary settlements part of the year. Sixty-one papers did not specify the livestock type raised by the study subjects although grazing and associated human migration patterns vary significantly by species. Among those that did, the principal livestock raised included cattle and camels ; 24% of papers indicated that more than one species was cultivated. Sample sizes and time periods covered. Given the variability in subjects and methods, the sample size of studies ranged from less than ten for a qualitative assessment of traditional beliefs, to a high of approximately 96,376 nomads verbally screened for active tuberculosis [30,31]. The included papers were published between 1974 and 2019, and most were published after 2013, consistent with trends in the increasing volume of scientific publications generally [32,S2 Fig]. --- Study designs, quality of study reporting, and risks of bias Study designs. The majority of research activities were non-experimental in nature; the most common non-experimental study designs were cross-sectional surveys and qualitative studies . Of the 15 studies employing an experimental design, there were 11 community interventions and four clinical or field trials. Thirty-four studies used more than one method. The remaining study types had a frequency of two or less. Quality of study reporting. Of the 102 studies that met the inclusion criteria, 99 of the papers contained six or more indicators of study-reporting quality . Eighty-five described how data were analyzed, 87 compared findings to other studies, and 64 noted study limitations. Most studies followed a standard reporting format, although only 84 of papers had both a methods section and described the data analysis, and only 60 of papers reported both the limitations and compared their findings to other studies. While all papers offered conclusions, 11 offered no recommendations and 10 others lacked specific or actionable recommendations, instead making broad suggestions such as "improve access to care" or "implement proper policy measures." Assessment and description of potential bias. Reviewers identified one or more potential sources of bias in 45 papers. Among these, selection , confounding , and reporting biases were identified as the most common potential problems. --- Research areas and study objectives Research areas. Five broad areas of research were identified among the included papers. The first area included epidemiologic studies that focused primarily on the prevalence of, and biomedical risk factors for, specific diseases or conditions, such as cholera, TB, and rabies . A second area comprised studies focused on the knowledge, attitudes and practices specific to certain conditions and diseases and the factors determining or correlating with knowledge, attitudes and practices . A third category focused on operational research intended to improve diagnosis and management of specific diseases , conditions , technologies , or the feasibility of specific approaches . The fourth area included formative and other qualitative research to develop hypotheses or guide the design of interventions . A final research area addressed policy and practice issues pertaining to perceived barriers, for example by evaluating the role of cash-based funds from Gavi, the Vaccine Alliance; task-shifting to counter human resource shortages in remote under-served areas; or the acceptance of private, non-employer-supported insurance policies for the poor . Specific human health topics. The health topic foci included reproductive health issues ; vaccine-preventable disease/immunization topics ; general health service access, uptake or delivery ; primary health care ; or disease-specific topics such as tuberculosis , neglected tropical diseases , polio , malaria , HIV/AIDS and zoonoses . Five papers on other unique topics were also reviewed . Themes impacting health services uptake by nomadic pastoralists. Ten crosscutting themes emerged from the iterative, inductive coding of the extracted data. Where indicated, sub-themes are also reported regarding facilitators of, barriers to and recommendations for improving the uptake of services . Theme: Distance/geographic access. Geographic factors were identified as barriers to the uptake of health services among nomadic pastoralists in 66 papers. These included the distance between temporary camps and health facilities ; limited operational capacity to provide outreach services to nomadic groups and difficulty locating them ; and the inherent difficulty providing services that require multiple visits in the absence of systems that would facilitate clinical continuity from location to location . There was not consensus on the irregularity of migrations however, as one paper tied their perceived regularity to the feasibility of outreach efforts. Similarly, 29 papers mentioned nomadic pastoralists' proximity to facilities, health care workers' familiarity with nomadic pastoralists' seasonal movement or knowledge of temporary camp locations and adjusting delivery strategies for seasonal conditions , as drivers of health service uptake. Approximately 10% of papers citing distance or mobility as a factor related to access measured actual distances to health facilities or services; the remainder did not quantify distance, or reported the distance perceived or estimated by respondents. Strategies to mitigate the impact of distance and mobility specifically were proposed in 49 papers. The provision of mobile health services was mentioned in 31 papers in response to the effect of geographic distance on health service access at permanent health facilities. Recommendations to implement programmatic solutions were made in 25 papers. Theme: Health service quality. The poor quality of health services delivered to nomadic pastoralists was identified as a barrier to uptake in 58 papers. Structural factors impacting the quality of services included deficient infrastructure, equipment, supplies, and health products ; insufficient or poor-quality data ; and inadequate numbers of appropriately trained health care personnel . The behavior and attitudes of formal sector HCWs toward patients were identified in 16 and 4 papers respectively. By comparison, 43 papers found that high-performing service delivery facilitated access. Well-trained HCWs , effective, targeted health communications , service reliability and stability of health supplies , or community members' positive perceptions of the quality and value of services were specifically identified as drivers of health service uptake. Explicit recommendations to improve the quality of health services were found in 75 papers. These included structural improvements in equipment, supplies and infrastructure , increased training and supervision to improve HCW attitudes and behaviors towards nomadic pastoralists, and to strengthen technical and preventive services and care delivery . Recruitment and training of community health workers and traditional birth attendants was also recommended as a means to decentralize and thereby increase access to certain services . An important subgroup of recommendations proposed integrating human health services with those of other sectors, e.g., the veterinary and education sectors which also provide outreach to nomadic pastoralist groups . Nineteen papers highlighted efforts to use veterinary extension workers to conduct human disease surveillance or vaccination campaigns while four others pointed to established educational programs as a potential opportunity. Improving core public health functions, such as data for program planning, surveillance, and monitoring and evaluation, was another sub-theme . Theme: Knowledge of disease and awareness of health services. Researchers identified nomadic pastoralists' limited knowledge of specific diseases , including due to lack of education more generally and limited familiarity with, and value of, formal health services to prevent and treat disease , as barriers to health services uptake in 38 of papers. Consistent with these findings, nomadic pastoralists' understanding of specific diseases , and awareness of health services offered locally were found to facilitate health service utilization. Recommendations to improve nomadic pastoralists' knowledge of disease and available health services were made in 35 papers. These were inclusive of broader scopes of work for CHWs, fixed-post health workers, and veterinary extension workers to deliver education sessions in nomadic pastoralist camps, as well as mass information campaigns by radio. Theme: Costs to nomadic pastoralists. Health service-associated costs were identified as a barrier to uptake in 23 papers. These costs included direct medical , non-medical costs , and the indirect costs of time and domestic productivity losses due to care-seeking . Affordability of health services, such as through reduced prices or introduction of material incentive programs that offset care-seeking costs, was mentioned as facilitating health service uptake in 13 papers. Recommendations to reduce costs to nomadic pastoralists were made in 18 papers. These included providing incentives and supply-side interventions to reduce out-of-pocket and indirect costs of time required to seek care . Theme: Tailoring interventions and materials to the local context. The failure to contextualize intervention designs through substantive community engagement was mentioned as a barrier to health services uptake in 14 papers. Nine papers specifically spoke to the lack of cultural relevancy. By comparison, 60 papers described the appropriate tailoring of interventions and strategies to the local context as facilitating uptake. The types of approaches credited with success generally engaged the community and local leadership , were adapted to the local context , offered flexible program logistics , or integrated human and animal service delivery . Recommendations to tailor interventions and strategies to the nomadic pastoralist context to improve the health services uptake were made in 35 papers . Recommendations included season-appropriate and venue-specific delivery , developing culturally and language-appropriate materials and targeting the appropriate communications medium . Theme: Social structure and gender. Recognizing the heterogeneity of nomadic pastoralist ethnic groups in Africa, the respective roles of societal structures emerged clearly as a theme. Some element of nomadic pastoralist "social structure" was identified as a barrier to formal health service uptake in 29 papers. Of these, 19 identified gender norms that impede health care access, e.g., the time demands of childcare, or those that prevent women from unaccompanied travel. Ten papers described how social structure could hypothetically drive uptake of services, for example through explicit recognition of family composition and clan hierarchy. Recommendations to adapt approaches to fit within normative social structures were found in 27 papers. Community-designed initiatives , efforts to explicitly recognize the role of religious and traditional leadership and gender-specific considerations related to service delivery were mentioned. Theme: Nomadic pastoralist beliefs, behaviors and attitudes. In 41 papers, the beliefs, behaviors and attitudes ascribed to the particular nomadic pastoralists studied were identified as barriers to the uptake of formal sector health services offered at fixed-post health facilities or through outreach. Examples included nomadic pastoralists' reported preferences for self-treatment and traditional medicine/healers . Studies did not always clarify, however, if this preference may have been related to factors such as cost, distance, knowledge, or quality/efficacy of formal sector health services, misconceptions about or perceived risks of "Western medicine" , or suspicions around mass outreach activities . The stigma associated with specific diagnoses was also cited as having a negative impact on health-seeking behavior. Recommendations to "correct" or align nomadic pastoralists' health beliefs, behaviors and attitudes with western perspectives by increasing biomedical knowledge of disease were found in 13 papers. These strategies included engaging with religious leaders, creating formal collaborations between professional HCWs and traditional healers and birth attendants, and conducting community health education sessions. Theme: Political will. Two papers explicitly mentioned issues with sustainability and insufficient political will as barriers to health service uptake among nomadic pastoralists , while three papers identified political commitment-demonstrated through government engagement and financial resource allocation-as a facilitator of uptake . In 15 papers, recommendations were made to increase political commitment through measures such as ministry-level coordination and collaboration , sustained financial support for interventions to improve health among nomadic pastoralists , and improved partnerships among researchers, policy makers, and communities . Theme: Social, political and armed conflict. The broader context of conflict within which health services may be delivered to nomadic pastoralists was noted as a barrier in 21 papers. These conflicts comprised those between nomadic and settled communities , nomadic pastoralists' conflicts with government authorities/services , and macro-level political and economic factors of resource scarcity, insecurity, or civil conflict in the country . Recommendations to address such conflicts were made in 19 papers. These included implementing participatory approaches to engage nomadic pastoralist communities in health program design to: dialogue with settled communities and government around land and water resources ; increase involvement of trusted community members to reduce tensions ; and separate health services from contentious government activities while integrating with well-received non-health services . Recommendations were mixed as to whether health service delivery approaches designed primarily for sedentary populations should be adapted to better serve nomadic pastoralists, or whether to design interventions specifically for nomadic pastoralists. Theme: Community agency. The absence of community agency-generally characterized as the capacity for self-actualization demonstrated through the exertion of power-was not mentioned explicitly as a barrier to health service uptake in any of the papers reviewed. However, it was mentioned as a facilitator of health services uptake in 3 papers. Although there is scant literature describing interventions centered around community agency, 10 papers recommended that community-driven interventions and initiatives could increase health service uptake. --- Discussion As the first systematic literature review focusing on the uptake of formal health services among nomadic pastoralists in Africa, the results highlight several previously unrecognized trends in the literature. Our review underscores the need for future research on this population and presents opportunities to address the gaps and methodological challenges identified in order to increase the evidence base for actionable, policy-relevant recommendations. --- Methodological issues of included studies Our results reflect the numerous interrelated programmatic and methodological challenges in delivering services to, and conducting research about, a population defined by its temporal and spatial movements [19,38,129]. One of the principal challenges we observed lay in the lack of a clear operational definition of nomadic pastoralism given the range in its expression along the continuum from nomadic to sedentary, also noted by Randall in her analysis of demographic methods that systematically exclude nomadic groups from censuses and maps [19]. Furthermore, in order to enumerate or sample a population, one must first locate that population [16]. This is perhaps one reason for the scarcity of census data on nomadic pastoralist and other mobile groups across the globe. Another methodological issue relates to the challenge of separating common tropes from the evidence base, as many authors are likely "outsiders" whose etic viewpoint may shape hypotheses and data interpretation. Stereotypes about nomadic pastoralists, for example, as "ignorant" and "uneducated" or as "wanderers"-which implies aimlessness-ignore the realities of a modern dual lifeway that both observes centuries of tradition while availing itself of 21 st century technology. These stereotypes ignore the role that globalization has played in the adoption of contextually appropriate technologies that link them to non-nomadic communities, ideas and economic markets. Despite lifestyle differences that distinguish nomadic pastoralists from their sedentary pastoralist counterparts, utilization of mobile banking, text-messaging, global-positioning systems, and the internet have increased the number and strength of nomadic pastoralists' cultural and economic ties, however, explicit recognition of this duality was largely unrecognized in much of the biomedical literature we reviewed [19]. A wider, more inclusive research perspective requires surmounting the barriers of culture, power dynamics and language to engage meaningfully with the nomadic pastoralists as collaborators as well as subjects. Transdisciplinary research methods such as co-design and governance of research, engagement of community members in conduct of research, key informant interviews, public meetings, and community-based participatory techniques such as pair-wise ranking, pile sorting, or free listing, can be effective means to elicit and engage an entire community [93,130]. Although there are limited resources about community-based participatory data collection techniques in nomadic populations, the more established literature base for refugees and for transdisciplinary research more generally offers approaches that could be adapted [131][132][133]. A number of papers drew conclusions or made recommendations that were not substantiated by the empirical data from their studies. For example, few studies reporting distance as a barrier to health services uptake included an empirical measure of distance to the health service in question, addressed its seasonal relevance, or compared this distance to other services and resources that nomadic pastoralists routinely access to determine if distance per se was the critical barrier or if this was a proxy for other barriers . Correlation between distance and health-seeking or uptake was in several cases presented as causality, even when researchers did not directly inquire about the role of distance, or failed to triangulate the reports alleging distance as a barrier against other competing priorities . Some studies based their research hypothesis on previously published reports that also did not measure actual distances. This practice reinforces preconceived notions about "reachability" and access, similarly explored in the context of malaria by Smith and Whittaker [129]. Kruger challenges the sole impact of distance, noting that pastoralists' seeking of services in a particular locality "may not be a linear function of distance," an assumption we encountered in many papers, but rather a function of "perceived quality of care," which can impact decision-making either in favor of, or against, formal health services. Similarly, of the 23 studies that described financial barriers, only seven included any empirical measure of direct costs of care or indirect costs of time spent seeking care. The nomadic lifestyle further challenges the applicability of conventional measurement tools such as wealth indices that are typically designed with sedentary populations in mind and focus on infrastructure and household goods that bear little relevance to a nomadic lifestyle. As noted earlier, pastoralism is an adaptation to changing environmental conditions and thus economic status, like residence, is dynamic and not easily categorized. Our results reinforce previous calls for more holistic paradigms of health care uptake that contextualize both service delivery and health behaviors relative to livelihood assets and their mobilization, and that consider not only vulnerability but resilience [134,135]. --- Research paradigms Our review also highlighted the tensions between supply-side versus demand-side paradigms in understanding how to improve health services for nomadic pastoralists. We observed that these paradigms were further differentiated by researchers into those that expressed more intrinsic values of improving the well-being and health equity of this often-marginalized population to more extrinsic, instrumental values of reaching nomadic pastoralists for programmatic purposes . As shown in Table 3, the intersection of supply-versus demand-side paradigms and intrinsic versus Table 3. Categories of research paradigms identified. --- Intrinsic Value Instrumental value --- Supplyside We [outside "experts"] need to increase health services uptake among nomadic pastoralists for their own good". Though external agents set the programmatic priorities, nomadic pastoralists can shape the terms of engagement. "We [outside "experts"] need to increase health services uptake among nomadic pastoralists for the benefit of the broader population." Health service delivery to nomadic pastoralists is a means to a given end designed and prioritized by external agents. --- Demandside Nomadic pastoralists define their own priorities and needs which are treated as valid, and their inclusion and ownership are essential. Control of conditions that impact services should be devolved to them so they can achieve and sustain their self-defined 'good'. Creating demand in nomadic pastoralists is a necessary good for the entire population. Adoption of services is a matter of understanding and shaping nomadic pastoralist demand to accomplish broader programmatic ends. https://doi.org/10.1371/journal.pntd.0008474.t003 instrumental value creates four broad research paradigm categories. In general, researchers who focused on the intrinsic value of health service uptake tended to cede the locus of agency to the nomadic pastoralists themselves, encouraging participatory research and communitydriven solutions. Supply-side paradigms emphasized solutions focused on what the health service provider could do to better reach nomadic pastoralists with medical services. These included strategies such as mobile outreach, integration of human health and animal vaccination services, training new cadres of CHWs from nomadic pastoralist communities, educating nomadic pastoralist communities about diseases and available health services, and improving service quality and reception of nomadic pastoralists at fixed-post health centers. Multiple studies focusing on supply-side factors featured implicit assumptions that the health services being offered were appropriate and helpful and should be desirable to nomadic pastoralists , whereas only a few papers recognized and mentioned the potential repercussions of ineffective care or adverse events associated with poor medical care. Demand-side paradigms that considered nomadic pastoralists as autonomous agents with legitimate choices, preferences, and constraints, and which highlighted reasons why they might choose to forego formal health services, were less common. Recommendations to improve uptake that were rooted in a demand-side paradigm included community-agency models to devolve design and implementation of health interventions to nomadic pastoralist communities themselves, and proposals to increase community involvement in planning and decision-making around health services and other resources at all levels . In a number of studies that looked at low utilization of skilled birth attendants, a seemingly complex problem was explained by a clear demand-side preference [91,123,136]. When probed, nomadic pastoralists communities expressed a clear preference for traditional birth attendants, regardless of training level, due to their standing and familiarity within the community and that individuals were chosen by the community itself [136]. It is important to consider both paradigms to accurately diagnose reasons for, and to improve, limited uptake, especially as some factors could be viewed as an intersection of supply and demand factors with the potential for intervention from either side. For example, nomadic pastoralists' reported preference to seek care from traditional healers rather than government health clinics may have been due to the unreliability of services due to personnel shortages, medication and vaccine stockouts, perceived poor-quality treatment received at government health clinics or to the potentially higher costs of care at a government clinic . However, in some papers, this observed preference for traditional healers was not examined further and was instead characterized as an uninformed belief in the virtues of traditional medicine, thus presenting what may have been a supply-side provider problem as a demand-side problem of consumer ignorance. Limited attention was given to how nomadic pastoralists' livelihood assets mediated the relationship between supply and demand for health services [134]. --- Understanding Context We noted that several biomedical research efforts failed to situate the issues within a broader societal context by not explicitly recognizing or measuring how factors such as cultural, political or armed conflict can limit access. Although some studies noted the minority status of traditionally nomadic groups and touched on conflicts related to access to water and grazing for their livestock, the implications of a majority-dominated health system were largely unaddressed, though symptoms of that hegemony such as language and cultural barriers within the system were noted. Indirect effects of conflict may be more difficult to measure, for example when perceived threats of violence deter patients' health-seeking behavior or providers' willingness or logistical ability to deliver services, as during the insurgencies of Boko Haram in northern Nigeria and Al Shabab in Somalia [137][138][139]. In the literature reviewed, the 'problem sets' were almost uniformly examined from the perspective of the researcher or service provider. However, some papers inverted the role of mobility from constraint to advantage. For example, Hampshire captured a critical aspect of context related to gender and age-related norms [42]. Although both can be socially constraining in specific settings, e.g., for junior wives in polygamous households, mobility offers women an opportunity to capitalize on the informal and temporary peer networks that emerge, coalesce and re-group during the course of migrations. Other authors have also referenced successful disease control strategies whereby services were delivered in contexts that did not present economic opportunity costs to the nomadic pastoralists [56,129,140]. Considering multiple perspectives within and outside of nomadic pastoralists communities is therefore important when defining health threats and opportunities, as factors that may be considered risks from one perspective may contribute to resilience from another [135]. The body of "One Health" research makes a compelling case for the appropriateness and robustness of service delivery models that consider human health in an ecological context by offering integrated care for pastoralists and their herds. These can be contrasted with biomedical approaches that prioritize human health without recognition of the pastoralists' own prioritization of herd health, sometimes at the expense of human needs [35,39,61,67,93,[141][142][143]. "One Health" models recognize that herd health, for cultural and economic reasons, can be a higher priority to the community than an individual human's and that "provider-centric" service models impart opportunity costs with real economic consequences for nomadic pastoralists. These researchers note that even in the absence of formal integrated, cross-Ministry efforts, collaborating with trusted veterinary staff to design and implement health services can enhance programmatic effectiveness [49,94]. --- Representativeness of the Evidence Base We observed that the distribution of the literature does not reflect the burden of disease specific to the region. According to the World Health Organization , all-age mortality in Africa over the 2000-2016 period is attributed to lower respiratory infections , HIV/AIDS, diarrheal diseases, non-communicable cardiovascular , birth-related conditions, and road injuries, and among children under 5, LRI, birth-related conditions, diarrhea and malaria predominate [144]. Yet little research focused on diarrhea or acute respiratory infections, whereas papers related to eradication and some elimination initiatives were overrepresented relative to their estimated disease burden. These patterns may possibly reflect funding opportunities related to increased global efforts for these diseases [145]. We also noted that the literature was not geographically representative of the region and specifically countries known for nomadic pastoralism. The African Union considers almost all member countries as "pastoralist" in some form, and while nomadic pastoralism is not practiced universally in Africa, only 29% of AU countries are represented among the papers meeting our inclusion criteria [18]. Research meeting our criteria from countries with known nomadic populations such as Eritrea, Djibouti, Cameroon, Mauritania, Algeria, Egypt, Morocco, and Libya were not identified through our review process. Similarly, twenty-one of AU member countries list French as an official language, however only five French-language papers meeting our inclusion criteria were identified, three of which focused on francophone countries. To some degree, this may reflect the overall dominance of the English language in scientific publishing [146]. --- Limitations There are limitations to our review. In the absence of standardized terminology regarding nomadic pastoralism, we sought to cast a wide net using terms characterizing or synonymous with our study subject; however, there is the possibility that papers including nomadic populations as a subject or subset may have been excluded if they did not feature the keywords and MeSH terms used. Given the focus of the AU Policy Framework for Pastoralism in Africa, we restricted our search to all continental AU members, thereby excluding seven island nations [18]. In order to further narrow results from the initial search resulting in 5647 papers, we focused on peer-reviewed, original research that clearly identified the target population in the abstract or title , potentially excluding relevant sources. By limiting our search to peerreviewed research articles, we may have omitted findings from reports, abstracts, proceedings, books, book chapters, or other grey literature. Although the inclusion criteria were explicit, evaluating abstracts required some subjective judgement by the reviewers and may have resulted in the loss of some relevant papers. Similarly, while the reviewers sought explicit designations of barriers, facilitators and programmatic recommendations in the papers, individual reviewers may have interpreted imprecise language differently. --- Conclusions and Recommendations The essential nature of nomadism presents a conundrum to deliver health services effectively and conduct operational research about their uptake. While we intentionally examined gaps and best practices for research from supply-and demand side perspectives, we did not anticipate the results would lend themselves to further parsing into the "unspoken" lens of researchers' values. However, the way in which researcher values were clearly, if unintentionally expressed, reinforced the objective findings related to research area, approaches and topics. Given the breadth of African nomadic pastoralist cultures and contexts, health-related services, and diseases included in this systematic review, we focus our recommendations on how to strengthen operational research about health service uptake in this population, as programmatic recommendations will necessarily be context-specific . Continued operational research in this area could contribute greatly to our understanding of disease dynamics among nomadic pastoralist societies, their valuation of traditional and formal health services, and strategies to improve services in the interest of achieving equity in health for these populations. 1. Use clear operational definitions and measure key constructs: Future research should focus on a well-defined operational definition of the research subjects grounded in a country-and/or ethnic-group specific literature review. Explicit recognition of the heterogeneity with which nomadic pastoralism is practiced, and how characteristics manifest in a specific context , will inform study design and considerations such as seasonality [147]. Well-articulated operational definitions of, and means to measure, hypothesized barriers and facilitators are also of paramount importance. Care should be taken by researchers, reviewers, and editors to ensure that conclusions and recommendations are rooted in empirical data and not merely echoing conventional wisdom and common tropes. --- Leverage new technologies: We encourage future investigators to avail themselves of new technologies such as smartphone metadata, biometric data, and automated cellular communications capabilities for use in the field, and especially to collect geospatial information to strengthen overall data quality [13,14,16,67,148]. We observed that these technologies were underutilized despite the extraordinary rise of mobile phone and internet coverage and valuable insights that spatial analyses can provide. Many free open-source data collection tools such as Open Data Kit © can function offline, and upload to a cloud server whenever internet connectivity is regained, thereby offering significant potential for expanded data collection. Additionally, while grazing areas sought by nomadic pastoralists are typically remote and often "off the grid," this does not preclude the collection of geospatial data that can be collected offline as it not reliant on cellular communications infrastructure [148]. The location of seasonal and temporary settlements, and the distances to waterholes, grazing areas, markets, and health centers, can produce critical data to inform policy, planning and delivery of health services. --- Conduct participatory research: Given the dearth of research about a very diverse population, we encourage researchers to engage in participatory formative research to inform the development of hypotheses, and to design relevant and valid research instruments. Through meaningful dialogue with research participants, transdisciplinary and participatory approaches also help to minimize etic biases by creating the opportunity for researchers to see nomadic pastoralists as collaborators and agents rather than "subjects," which ultimately strengthens the evidence base and results in the generation of contextually-specific, policy-relevant findings and recommendations [130,132]. --- Theorize causal effects: Future research should include more careful theorization to explicate the cause-and-effect relationships being investigated and the potential for feedback loops between supply-and demand-side factors. --- Review grey literature: A systematic review of the "grey literature" would be of value to reveal a body of data that has been collected but remains in limited circulation. --- Expand country settings and diseases studied: Additional research is needed on African nomadic pastoralist groups in francophone and lusophone country settings and on health conditions that represent a larger share of the burden of disease within the region generally and for nomadic pastoralist communities specifically. https://doi.org/10.1371/journal.pntd.0008474.t004 --- All relevant data are within the manuscript and its Supporting Information files.
The estimated 50 million nomadic pastoralists in Africa are among the most "hard-to-reach" populations for health-service delivery. While data are limited, some studies have identified these communities as potential disease reservoirs relevant to neglected tropical disease programs, particularly those slated for elimination and eradication. Although previous literature has emphasized the role of these populations' mobility, the full range of factors influencing health service utilization has not been examined systematically. We systematically reviewed empirical literature on health services uptake among African nomadic pastoralists from seven online journal databases. Papers meeting inclusion criteria were reviewed using STROBE-and PRISMA-derived guidelines. Study characteristics were summarized quantitatively, and 10 key themes were identified through inductive qualitative coding. One-hundred two papers published between 1974-2019 presenting data from 16 African countries met our inclusion criteria. Among the indicators of study-reporting quality, limitations (37%) and data analysis were most frequently omitted (18%). We identified supply-and demandside influences on health services uptake that related to geographic access (79%); service quality (90%); disease-specific knowledge and awareness of health services (59%); patient costs (35%); contextual tailoring of interventions (75%); social structure and gender (50%); subjects' beliefs, behaviors, and attitudes (43%); political will (14%); social, political, and armed conflict (30%); and community agency (10%). A range of context-specific factors beyond distance to facilities or population mobility affects health service uptake. Approaches tailored to the nomadic pastoralist lifeway, e.g., that integrated human and veterinary health service delivery (a.k.a., "One Health") and initiatives that engaged communities in program design to address social structures were especially promising. Better causal PLOS NEGLECTED TROPICAL DISEASES
Introduction There is a little-known service delivery model that has been gaining profile and influence in the Pacific Northwest, although it is not unique to this region. Called "culturally specific organizations" these are organizations that service specific communities of color and that have distinct relationships with these communities, having been developed by and for these communities. Over the last 15 years, the sector has consolidated in Portland region and developed a collaborative coalition that has been a prominent advocacy voice. There are two foci to this advocacy: the first is identifying racial inequities that are prominent in the region and advocating for racial equity initiative to be taken up in public and institutional policy and practice. The second is advocating for larger portions of funding to be allocated to these organizations that have been generating very strong outcomes with clients of color. In a subsequent initiative that is the focus of this article, a subset of these organizations has come together in a collective impact model, to address both needs of the partners and to conduct research that holds potential to deepen the evidence base of the practices that are effective in supporting children and their families. The research methodology will be detailed in the subsequent section: first we identify the rationale for the organizational assessment tool. In Portland, attention to racial equity has surged in recent years. Largely attributed to a series of research reports published by the CCC, policy makers have taken notice and responded with commitment to address racial disparities across numerous systems and institutions. The Coalition of Communities of Color and its members have been working strategically to prioritize issues and levels of government and have been successful in altering the funding landscape for culturally specific organizations . More dollars are definitely flowing to CSOs and, due to parallel advocacy efforts by the CCC, expectations have been raised for mainstream and culturally responsive organizations to disaggregate their data to identify how well they are serving community of color. One feature of this movement is that funding bodies are requiring that organizations conduct an organizational assessment for racial equity and cultural responsiveness and submit their action plan for improvements to their funders. This has been an important gain for racial equity in the region. Here is where the issue becomes more complicated: these tools are designed for mainstream organization, aiming to educate and support discernment of assets and challenges -both omissions and violations -with which mainstream organizations practice. In a pilot study of an organizational assessment tool back in 2013 , two culturally specific organizations completed the tool, only to assert that it was a cultural mismatch, and the tool did not work for the organization. At the same time, local funders and the community in general, views equity assessments as an important accountability tool, and leaving culturally specific organizations omitted from this accountability step diminishes their credibility. It also leaves them out of a series of investments to improve racial equity, as funding is sometimes available for these processes, as well as technical assistance, abundant trainings are available on the topic, and numerous culturally responsive organizations are gaining profile through speaking engagements, and access to policy makers. The problem, thus, is two-fold: first, the movement towards racial equity within dominant culture organizations is helping such organizations become more desirable. Note, at the same time, that communities and organizations of color affirm these efforts for their promise to better serve their communities. Unfortunately, the practice of unequal investments has tended to leave organizations of color with a reduced competitive advantage. The second problem is that of having inadequate assessment tools for CSOs, and one that this initiative begins to address. Trenerry and Paradies identified significant benefits emerging from conducting organizational assessments: creating an evidence base that problems exist, creating impetus for serious reforms, sustaining a focus on the whole organization, creating organizational accountability, and raising internal and external expectations. Together, these benefits create momentum for change. This research initiative aims to fill the gap and create a relevant culturally-specific equity assessment tool: by using the findings of a major research study, we operationalized this evidence base to create an organizational self-assessment for culturally specific organizations. We piloted the Tool with four organizations and share these insights in this article. --- Research Methodology and Results Successful Families 2020 is a collective impact initiative engaging in a combination of service design and implementation, systems change and advocacy, and research. This research study builds on one of its major research initiatives, and its subsequent adaptation into an organizational assessment tool. The research study is a combination of an in-person Delphi study, and a consumer voice study. Briefly, the Delphi is an established research method whereby experts come together to build consensus on a complex topic . Linstone & Turoff provide greater detail, with this definition: "A method for structuring a group communication process so that the process is effective in allowing a group of individuals, as a whole, to deal with a complex problem" . In our situation, approximately ten deeply experienced organizational members were nominated by each organization, who came together for three four-hour sessions to build consensus on the features of their culturally specific organizations that they perceived were responsible for gaining excellent outcomes. The result is a two-part list of 12 organizational assets and 25 additional assets that characterize the organizations' staff . Of interest, these organizations each represented the following communities: Latino, African American, Native American, Asian and Pacific Islander, and immigrants and refugees of color. Once this research concluded, a second part to the study was conducted to assess how clients and community members valued the organization. Community researchers were hired and trained to gather data in each organization, using a mixed methods approach with heavy reliance on a 44-question survey alongside these qualitative efforts: eleven focus groups, 46 interviews, 6 popular education activities, and 22 organizational and program observations. The survey reached a representative sample of clients, at 505 completed surveys. While there is much to be learned from the research, we can definitively state that clients highly value the full range of organizational and staffing assets, with an average rating of 92.7% achieved in the top two ratings of a five-point Likert scale. Our best efforts to discern an industry standard came in at approximately 77% . In short, the results of this study have articulated the assets of the partner organizations and established their high valuation by clients and community members. The full set of assets provides a significant window into the approaches that are used to culturally specific organizations to effectively serve their communities. Sometimes we refer to these insights as the "recipe" or "ingredients" that accounts for their strong results. The assets cover the following domains: • Community embedded, meaning these organizations are historically and currently by, of, and for the community; • Culture of success, as tied to holding beliefs in the strengths of clients and the community, and high expectations for positive outcomes; • Responsive to community needs, with practices that ensure priorities are surfaced and the organization is intentional in their responses; • Advocates to improve community and client success, with policy and institutional advocacy effectiveness a priority; • Inclusive, with community members entering the organization knowing they belong and respect is experienced; • Culturally relevant, meaning that services are designed for the community, respectful of their cultures, traditions, and circumstances; • Comprehensive continuum of services, with holistic wraparound opportunities available wherever possible, and the whole family welcomed; • Relationship model, whereby staff prioritize welcome, compassion, affirmation, respect and responsiveness; • Staff are personally invested, as they emerge from the same communities as their clients and subsequently hold futures that are tied to the success of their clients and community. Creating the Tool involved a collaborative process of 2-3 nominees from each organization who became the Advisory Committee for the Tool's development. The team met three times to clarify objectives including depth and breadth of the Tool, troubleshoot organizational ambivalence , and contribute to the specific questions in the Tool. We also consulted with the larger project's Data Team who has met every two weeks for the last four years and serves an essential role in the larger initiative, leading and advising the research team at United Way, as well as the Principal Investigator from Portland State University. When ready to launch the pilot, each organization was oriented to the Tool, technical advising support made available, and asked to complete the Tool within a three-month period in the winter of 2018. Once completed, one-hour debriefs of that experience occurred, with a visit from the PI and United Way's lead researcher, attended by ¾ of the members of the local teams leading the assessment attending. In addition, a survey was conducted for those who were not able to attend the debrief meeting, to capture their experience. Before the Tool itself is described, it is important to understand the significance of this undertaking, and what can best be described as ambivalence of both the Advisory Team and the Data Team for the undertaking. --- Setting the Context: Contentions in The Successful Families Tool The following issues emerged prior to and within the research study. When we considered that the SF Tool had potential to hold member organizations accountable for their grant activities in unforeseeable ways, it become a very thoughtful process both among organizational leaders and the Advisory Committee. . While funders of the study anticipated using it as an accountability measure, parallel to the equity assessments being done with dominant culture organizations, the communities involved decided to anticipate its potential harms to CSOs and build precautions into the Tool. Unlike the equity assessments for culturally responsive organizations, this assessment is not about discerning the status of the organization's location on a spectrum of cultural responsiveness. It is not about determining if the organization is a "good enough" CSO. Rather, it is about CSOs assessing the concrete ways in which they integrate assets and identifying areas for deepening their relationships and responsiveness to community needs and priorities. It is not about whether a CSO is culturally specific or not; it is about how the CSO demonstrates its assets. We decided not to include a "benchmark" or "targets" approach as this would communicate a sense of whether the organization is "good enough" to earn its status as culturally specific. Another contention is that this effort is a capitulation to funders who are perceived to be over-scrutinizing communities of color, and that the project holds potential to backfire. Explicitly, some organizational members envisioned that their reporting of results would be viewed as a deficit. When mainstream organizations begin an equity journey, they are applauded for their initiative and sharing of their challenges in advancing equity. Their shortcomings are perceived as authentic insights, and they are perceived as honorable in committing to the journey. As culturally specific organizations dig into related work, concerns emerge about the ways this effort will be interpreted. Rather than being honorable, it may be perceived as disclosing unforgivable deficiencies, particularly when CSOs have been understood as the service delivery models of choice for communities of color. In some ways, this is a result of the effective advocacy with funders, whereby CSOs have been asserting their capacity to effectively serve their communities. Here is the message that was provided to funders to anticipate this dynamic, and also included in the Tool to highlight that parallel advocacy is being done to resist this potentially damaging discourse: We ask for funders and stakeholders to give CSOs the same affirmation and support as has been seen when CROs undertake such self-revealing work. It is tough to scrutinize one's own practices. Know the sector undertakes this work with the goal of better serving their clients and communities. This is a movement worthy of respect and support. In response to this concern, agreements were reached with local funders that reporting would be limited to the action plan that emerges from the assessment. --- The SF Tool: Content The full Tool document includes an introduction that addresses the above concerns, an FAQ on how to complete the Tool, the tool itself, a set of standards that are aspirational in nature and emerge from the Delphi findings and other relevant literature, a framework for creating an action plan, definitions, and supplemental resources, such as a client assessment tool that can be used to gather feedback on the organization and services. The Tool's questions include yes/no responses, short answers and narratives/longer answers. The SF Tool includes ten domains, 75 standards, and a total of 87 questions. A sample of one standard and a related question is included with this article. We share this to demonstrate the character and a little bit of the substance of this Tool, recognizing that these details are only a glimpse of the content. We encourage interested readers to connect with the United Way of the Columbia-Willamette or Dr. Curry-Stevens regarding access to the 17-page assessment tool. --- Research Results This section is organized to cover the experiences of the four pilot organizations, introducing the section with a summary of the goals of the assessment and action plan process. Attention then turns to methods through which the Tool was administered, and subsequently to the experiences of the pilot organizations, divided into the process-oriented experiences, and then the substantive insights the Tool yielded. Closing this section are learnings from the pilot experience. The goals of this Tool were robust: • Its implementation provides actionable insights for participating organizations • It holds potential to be a source of quality improvement • Through its alignment with the research-based Delphi/Consumer Voice study, the assessment becomes a source of evidence that organizations can use to discern its alignment with the ideal features of a culturally specific organization • It provides an important counternarrative to culturally responsive and mainstream organizations, highlighting distinctive assets of CSOs, and supporting an aligned but unique approach to equity is relevant to the context of organizations of color serving their own communities • It holds potential as an accountability method to be used with stakeholders, funders, and local communities --- a. Administering the Tool Those designing the Tool anticipated that it would begin with senior management deciding who would lead the Tool process, and subsequently this driver/s would ask for self-nominations to participate, and then the organizational leaders or their delegates would ensure that there was breadth across the organizational departments as well as hierarchical representation. Supplemental invitations would be made to ensure this. Our initial FAQ content identified that the team of ten to twelve people would likely need to meet three to five times for three to four hours. It was designed to be self-administered, without the need for a consultant to guide the process. We also expected that two or three people would do the writing of the assessment, requiring additional hours for this role. Variations to this envisioning occurred in the pilot and shared below. The reality of organizational life is that getting a large cross-sectional team together is very difficult. Organizations also are stretched in different ways for different reasons: at year-end, for example, administrators are working to close off budgets and grants. In the summer, many staff take holidays. In the fall, many programs are ramping up, and often with new staff being onboarded. When large grants are applied for, staff leads and data staff are stretched. In essence, there is rarely a good time for gathering a large group of organizational leaders and regular staff with representation across the organization. In response, we see that each organization adapted to their own context. Here are the processes used by the pilot sites: • Immigrant and Refugee Community Organization worked with an existing management team as the primary team, and those members brought relevant topics to their own teams for input. Additional staff groups discussed relevant questions, totaling 8 additional meetings. The primary team met four times, and additional preparation meeting occurred between these members. • Self Enhancement, Inc. determined it was impossible to gather a large group for a series of meetings and had one coordinator meet with smaller groups that represented all sectors of the organization. Fifteen people were involved in the assessment, organized into smaller teams, and responding to a range of questions that were assigned to each team. A total of ten meetings were held, and all meetings were scheduled within one week. The staff lead reviewed and organized the questions according to the expertise of the staff in the organization. • Latino Network decided to hold just two meetings with the team of ten. The first was 90 minutes, and the second was going to be as long as was needed, and the work was completed in 3 hours. There were two representatives from each of 5 organizational teams, and each team shared their input on each question in the Tool. The same group was involved from start to finish in this method. Reducing the number of meetings to two supported this organization's process. • Native American Youth and Family Center was completed in a manner similar to IRCO. The executive team led the process and appointed a leadership team to organize and facilitate the process. This was a program team of three people who were consistent in attending three meetings. All in the organization were invited to join the assessment process, with the management and executive team leading the process. Three 90-minute meetings occurred and 20 people participated. This larger team of 20 worked through the questions sequentially. All departments participated, and there was representation across the hierarchy of the organization. Between the meetings, notes were posted and all were invited to edit and expand on the notes. Each organization adapted to its local context, its opportunities to include additional staff, and the degree to which the organization was time-pressed. The variations show the adaptability of the Tool alongside the creativity and responsiveness of the Tool administrators in the organizations to ensure that the process was not overly onerous and that local conditions were respected. --- b. Insights from Debriefing each Organization i. Process-Oriented Experiences This section identifies two benefits of the assessment experience: broadening one's understanding of the organization, and relationship development. It also covers perspectives on two potential challenges: the involvement of the CEO, and the narrow timeframe of 2 months for implementation. All the organizations in this pilot have budgets in the range of $10-20 million and are relatively large human service organizations. Staff complements are typically larger than 100, and many do not know each other, particularly between direct service and administrative staff. Each of the participating organizations identified how listening to others' perspectives holds potential for a spectrum of benefits. A few examples illustrate these benefits. NAYA shared stories about clients who had been successful in the long-term and the ways the organization had supported them. Catalyzed by the questions in the Tool, these narratives helped all units understand their contribution to these long-term success stories. Staff also stated that "the process helped us to learn about other parts of our organization." IRCO highlighted the generative conversations that served to energize and broaden possibilities for the future of the organization. While these specifics are in the next section, the contribution of the Tool to foster generative, relationally-rich, explorations of the organization is encouraging. The ethos created by the Tool served to strengthen steps forward. Each debrief group was asked about the level of authenticity they perceived existed in the assessment dialogues. Across the groups, they perceived that there was high authenticity as the dialogues surfaced both assets and challenges facing the organizations. In the words of one partner, "we had lots of 'yes' and 'no'… sometimes perspectives varied across departments and sometimes members within the same team had different perspectives… each conversation spawned additional conversations." 1 Another partner identified that it took a little bit of time to build authenticity, as "people want to shine -not admit their failures." Only one of the four organizations decided to include their CEO, perceiving that it could narrow the comfort of participating. That said, it was important to have a senior administrator as part of the team who could speak on behalf of the CEO, and who had decision making authority. All organizations were sensitive to this possibility and held "concern for the chill" the CEO presence might bring. Most decided to not fully participate but to attend for half the sessions and pay attention to the dynamics to see if critique was surfaced. In the words of one staff lead, "safety and openness was noticed… staff comments were not judged or evaluated, but seen as a perspective." In each team's debrief, the question of a 2-month timeline for completion was raised. While all recognized the importance of gathering more voices, none advocated for a longer time period. One member said, "it forced us to be motivated moving forward." While each question could be discussed at greater depth, the teams identified their own "sweet spot" of time and comprehensiveness. While these varied, they were relatively equivalent, and no organization became disenchanted with the process and commitment remained high. This is an excellent achievement as implementing the action plans is the most significant outcome of the process, and where real organization strengthening can be experienced. If the process were drudgery, then energy for its results would be depleted. ii. Substantive Insights 1 Italicized text are quotes from staff in the pilot organizations. While this article distinguishes process-oriented and substantive insights, these are actually intertwined, and mutually reinforcing. They are addressed in separate sections to distinguish the unintended relational benefits from content that links to the Tool and assists in detailing how it achieves its intended goals. The debriefing sessions illustrated how substantive insights were achieved with each of the organizations, and additional value-added from the Tool. Each organization will be discussed in turn, and include the broad dimensions of the Action Plan. IRCO has already benefitted from completing the Tool. First, in their words, "staff are super-appreciative of these CSO-specific equity discussions." It "makes concepts like respect tangible." The assessment processes coincided with a strategic planning process where staff have sought to define an answer to this: "How do we live equity?" The Tool provided them with answers to this question, and in turn strengthened their strategic planning tasks. Staff experiences further affirmed the benefit of the asset-based approach that is embedded in the Tool: "we really like the asset based [approach] for defining a CSO, ranging from leadership to programs. Without this, it is hard for staff to defend [the organizational model]… at the organizational level, it highlights our depth and uniqueness." Second, in completing the Tool, We found threads that continue across the organization… and built our identity as an organization… we've wanted to be more than a collection of programs…. this builds our base to grow on…. We identified the common themes that we all share. This identity-based benefit was unanticipated. IRCO has culturally specific units alongside more pan-community services. Resulting from the Tool is a stronger sense of organizational integrity, with these threads helping members discern its comprehensive asset base, and there was, to those of us in the debrief, a palpable sense of pride in the organization. The third, and potentially most important benefit, is that the Tool "builds the evidence base for us… and expands broader understanding of CSOs." It provides the organization "with a way to quantify and evaluate equity." The Tool itself, due to its rooting in a robust research process, creates an evidence base for the organization in terms its alignment with and incorporation of the Delphi assets. The Tool supports the organization's ability to identify its assets and its priorities for quality improvement. A challenge surfaced for IRCO: "highlighted was the need for alignment of data systems," which are unaligned due to the disparate reporting requirements of funders. IRCO now sees the need for and importance of pan-organizational impacts. This in turn, requires a different approach to evaluation, beyond the typical program-specific, client-focused evaluations required by funders. IRCO now perceives their future to be increasingly tied to an ability to identify, on an organization-wide level, their impacts and return on investment. IRCO intends to repeat this assessment in the next year or two. It also envisions a broader consultation process with clients to include their perspectives more directly, and inclusion of the organization's Board of Directors, and the Advisory Boards of their community-specific programs. Its Action Plan will focus on making the threads that became apparent in the assessment process more durably embedded into the organization, through policies and procedures development. Aiming for greater consistency across the organization is its goal, and supporting its staff to align more fully with related objectives is seen as a parallel process. The organization also intends to develop a more cohesive set of evaluation practices that will document the ways in which the organization is impacting the wellbeing of its communities. The second organization, SEI, serves the African American community. Completing the Tool was confirmed as a "good exercise [that] affirmed the range of our practice" which were often a compendium of "many small things" such as being open on Saturdays and having many initiatives to support Black families. The benefit of focusing on the whole picture of the organization as opposed to the conventional stance of focusing on specific programs was important: "It was good to slow down" and keep the assets of the organization in view. Discussions were generative, as abundant ideas emerged, such as avenues for client feedback to be gathered, and parent advisory groups to be created for youth programs. Another benefit was to help the organization prepare for a generational turnover, as many of the long-term senior staff are approaching retirement. Completing the assessment brought the issue of fidelity to the organization's values into focus: there are many assets of the organization that have not been codified, some of which have historically been priorities and treated intentionally, but others have been somewhat neglected over time. At times, it "felt odd to explain practices, because this is just what we do." For example, about 85% of the staff are African American, which is "not due to policy, but what we do." Bringing these assets into focus, and placing them into a larger framework of culturally specific organizations as a service model is helpful both for this organization and additional CSOs. One important challenge for SEI was ambivalence about creating policies to entrench the organization's practices and procedures. While the overall assessment process highlighted that "we do things every day that we take for granted" there is value in making commitments more durable and entrenched. But similarly, there is concern that policy can lead to a loss of flexibility and creativity in how staff responds to clients and community members. Overall, the group decided that the organization can benefit from codifying approaches, as a practice that can both invigorate attention to neglected elements, protecting from lost history with staff turnover, and onboarding of new hires. The third organization Latino Network serves the Latino community. Completing the Tool came after the organization conducted a climate survey a few months earlier. The climate survey was more ground-breaking for the organization, as it was a deep dive into the ways in which inclusion and acceptance were actualized for staff. Results were overwhelmingly positive and the task of this Tool was an easier process for all. The debrief with the team leaders was straight forward with few concerns raised. The process was confirmed as beneficial for the organization, and it was important to have "our organizational values embedded in the Tool, and shared across the CSOs." As the Tool "helps the organization identify these values [and how they show up], it helps strengthen the organization." An additional benefit was highlighted: that it is "rare to focus on the whole organization" which is a benefit echoed by all the pilot sites. Extending this, it is also of benefit to bring multiple lenses to the domains covered in the Tool, as each program team in the organization commented on each question, and all on the assessment team heard these perspectives, frequently leading to a deeper and more nuanced understanding of the issues. The fourth organization, NAYA, serves the Native American urban community. NAYA found that the Tool supported their engagement as a community of staff. Although their cross-organizational identity is strong, the pace and volume of work limits the depth of relationships that exist across the 140 full-time staff. Relationships between staff are key for sustaining relationships and developing program innovations that expand access to services across departments. One example is that staff in two programs had time to discuss client experiences and to share long-term progress of some youth. The desirability to better link the two programs became clear, and service linkages are now being developed for clients from exploring college and career opportunities and preparation for adulthood. In another example, staff across departments deepened their appreciation for the fullness of how service-level staff are committed to their clients: "Everyone here is on overload. Their life and job are one… they put in a lot of extra hours. It really is remarkable." Major elements of the Action Plan are two-fold: to create a consistent and formal process for organization-wide client satisfaction assessments, and to make more effective use of evaluation practices and the data collected by the organization. At present, numerous programs are required to submit to outcomes to funders, but cross-organizational data is not effectively used to strengthen the organization. In addition to these core elements in the Action Plan, there were insights that will inform the strategic plan of the organization as it articulates its vision for the next five years. Insights from executive staff are that there has been mission drift as a consequence of funding constraints, and the organization aims to deepen the resources it makes available to its community, and aims to strengthen its identity as a holistic presence in the community. Says one leader, "We are trying to keep clients here instead of sending them out to other [non-Indigenous] services… we are looking at us as a whole with many moving parts." Another stated: "This helps our strategic plan and opened ideas of where it can go… IRCO already has a sense of who we are as an organization… now we can focus on where we can go." The organization also includes more relationship building time across the organization, and intends to "create time to explore and develop more collaboration and collective responses" to client and community priorities. If some streamlining of workloads could occur, the value of simply being together in dialogue about the organization and its community could manifest. Preserving the "sense gained in doing the Tool" could strengthen the organization. --- c. Conclusions from the Pilot Study Overall, participating organizations confirmed that the Tool process was valuable for their quality improvement, for affirming their organizational and staffing assets, and for furthering their insights and vision for strategic planning. There are four research findings from the pilot process: the Tool achieves its intended goals, although it is premature to confirm how quality improvement is achieved, gains for the participating organizations are varied and positive, creativity in administering the Tool demonstrated its adaptive capacity, and very few revisions are suggested prior to disseminating the Tool itself. --- Discussion of Results --- a. Tool Revisions Relatively few improvements were recommended for the Tool. There were two questions that were repetitive, and a few questions on communicating the findings and developing the action plan needed to be move towards the end, as they were positioned prematurely in the text. Overall, we were surprised that so few tool revisions were suggested, as it is a large tool and all four major equity groups as well as immigrants and refugees participated in the pilot study. The debrief of the pilot revealed procedural suggestions, and highlighted relational opportunities embedded in the Tool, but the Tool itself was deemed strong and relevant. A minor element is that linguistic questions are most relevant for organizations that serve relative newcomers to the region. A note was placed in the document to skip these questions if not relevant, and an additional question asked about the role of the organization in preserving the original languages of those in their community, as a pathway to strengthen cultural identity. One organization wanted the Tool to be more quantitative. For the organizations wanting to measure change across time, the current heavy reliance on narrative poses some challenges. Discussion was held early on in the Data Team about the value of having clear quantitative metrics embedded in the Tool. Quite simply, the generative dimension of having multiple perspectives on key themes would have been narrowed, and highlighting quantitative dimensions would have reduced the appeal of the process for many involved. How an organization reflects , the inclusion of its community cannot be reduced to a number. On this question, we discussed the option of saying, "how many community members provided feedback to the organization in the past year?" The Advisory Committee and Data Team discerned that too much effort would be required to track this for relatively little gain, the group tracking this could change in subsequent years and variations in the method would negate the reliability of the findings, and emphasis on numbers to measure what should be a quality metric held potential to diminish the intention of the item. Ultimately, while many on the Data Team held a desire for more quantitative measures to best measure progress, qualitative measures were preferred, prioritized and thus the request was not implemented. To reflect the spirit of this desire, a few more quantitative dimensions were included in the yes/no questions, such as, "do you collect data on the race and ethnicity of your clients and staff?" and "do you have a formal process for listening to community priorities?" Implied are that some key practices can be tracked over time. Moving from a "no" to a "yes" would signal substantial quality improvement. --- b. Ethical Considerations The ethical dimensions of the SF Tool are two-fold: language and its context, and inequitable conventions in accountability practices. Some dimensions of the SF Tool continues to embed culturally dominant language and constructs. As an example, the SF Tool relies on the concept of "quality improvement" in an untroubled manner, without recognizing that there is a dominant culture context to QI that presupposes objective decision making, concise decisions to respond to new information, and an ability to track outcomes. The partners in this study are typically skeptical of dominant culture research, which has often been used to marginalize their communities, and impose interventions that have not been validated with their own communities and in the current context, which for these organizations, in the era of President Trump's active marginalization and dehumanizing of immigrants, refugees and communities of color, has been considerable. It will be important to review the concept of "quality improvement" and establish a culturally specific version to be integrated into the Tool. Concerns remain regarding how the Tool is used for accountability practice. As noted earlier, accountability has typically worked against culturally specific organizations, as the requirements for accountability have been dictated by majority culture organizations within frameworks that function within dominant discourses about both interventions and results. Little attention has been paid to themes such as resistance to racism and xenophobia, or to deepening critical consciousness. That said, all were in favor of using the Tool to be accountable to one's staff and one's community, but cautious of the boundaries that could upheld to keep their efforts from being scrutinized by unintended audiences. It is important to remember that majority culture systems have created this dynamic and the skepticism that results is important to respect. --- c. Limitations of the Research The pilot study was conducted with four culturally specific organizations in the Pacific Northwest, and specifically in Portland. There may be cultural dimensions and context-specific elements that limit the value of this study. As well, the lead researcher was the author of this article who may be invested in a confirmation bias that leads her to overlook challenges to the Tool and the research practices. We hope that expanded use of the SF Tool will yield additional information and insights about its relevance and improvements needed. Tracing the long-term organizational benefits of conducting the assessment and action plan for these pilot organizations holds potential to be helpful to our knowledge base of the usefulness of this Tool. Such tracking could also help guide future revisions to the Tool, ideally lowering the number of questions to a less time-consuming organizational commitment. The teams developing the Tool worked hard to achieve this and were successful in reducing the original number from 114 to 87 questions but were unable to go further. If we had insights on the vehicles that yield the most important forms of quality improvement, a narrower tool might result. Such prioritizing is impossible at this time. --- Next Steps for Tool Improvements Two sets of improvements are needed. The first is to address the narrow testing environment and seek additional input from a wider range of organizations and researchers. This would address the issues raised above in "Limitations of the research." The second is to recognize some challenges with the Tool that can benefit from additional research, as a result of conceptual limitations identified below. Cultural alignment between staff and service users is presumed to be a universal positive within the SF Tool. While this is affirmed by literature in fields of social work, education and health services , some program participants prefer to be served by a person who shares their larger lived experiences , but not by someone who is a member of their clan or sub-clan: "For oral societies, information is power" and this concern tends to negate assurances of confidentiality. There is additional research that suggests holding "similar values, attitudes, beliefs and worldview" is more important than racial alignment. Again, however, the perspective on racial and cultural alignment shifts, this time with the benefit of improved research practices: Vergani et al conducted a meta-analysis of all post-1996 Australian research studies on ethno-specific services, with phenomenal findings. Fully 96.2% of studies demonstrated that racialized service users were effectively served by such services, and 81.8% of racialized service users were not effectively served in mainstream organizations. The research is solidifying again towards the benefits of culturally specific organizations. Another foundation is that clients benefit most from more comprehensive engagement with the organization, but there are relatively large sections of the community that "come when they are in need, but then don't come in again." This prevalence tends to cause the organization to prioritize crisis services, although believing that clients are best served in preventive, holistic and comprehensive culturally relevant services. Third, there is a construct in the Tool that clients will ideally build a prideful identity within their own culture. This is limited, however, by a range of clients who do not want to be explicitly recognized as members of their own communities, due both to a yearning for inclusion in US society, and due to the xenophobia and racism that seeks to have people of color distance themselves from their cultural and ethnic supports and traditions. These three challenges do not undermine the Tool, and no revisions were asked for related to these concerns. But these insights are important to preserve, and to share with those who implement the Tool in the future, so as to build awareness of the challenges in alignment across cultures and contexts that may require local adaptations. An additional introductory section will be added to groups who face similar concerns and to suggest pathways to reflect them in the text of the assessment process. --- Conclusions of the SF Tool Our conclusions are five-fold. The Tool is an organizational assessment process that is relevant for culturally specific organizations across different cultures, filling an unmet need among organizational equity efforts. Second, the Tool has led the participating organizations to develop action plans that cover a spectrum of beneficial insights and intentions. They highlighted and reminded organizations of the fullness of their value to their communities, stretching considerably beyond the normal program evaluation insights that are more limited in focus, and operationalized ideas for quality improvement that are seen useful for strengthening the organizations' value to community wellbeing. Third, participating organizations anticipate using the Tool's results to strengthen the evidence of their usefulness to their communities and service users. In being tied to a research study that evidentiary in nature, the results deepen the organizations' own evidence base, and subsequently their credibility for effectiveness with culturally specific communities. Fourth, the Tool's process has led to unanticipated benefits that are relational in nature, and that these improved relationships hold potential, in turn, to improve programs and services, organizational identity and capacity to deepen collaboration and problem solving. Fifth, the Tool can adapt to an array of implementation sensibilities and continue to generate useful results. Regarding unmet goals, it is early as yet to discern quality improvements that result from the action plans, we are unable to confirm that the Tool is useful for quality improvement. That said, at the close of the Tool processes, energy remains high for the teams implementing the process, and confidence in the usefulness of the findings is also substantial. The nature of the items in the pilot organizations' action plans are a combination of what can be called "low hanging fruit" that can be readily implemented and more serious actions that are useful to each organization's relationship with their community. These include a range of enhancements that include more robust roles for service users to inform organizational priorities, entrenching key practices into policies, deepening relationships across branches of the organization, and strengthening the organization's use of data systems -which was the only element that surfaced across all four pilot organizations. A vision exists across organizations to have time and resources to learn more about the whole organization and avenues that need strengthening. This comes with a needed advocacy agenda to have funders prioritize this over program-specific output and occasional outcome measures. The Tool has emerged, as evidenced through this pilot study, as a community-validated organizational assessment and action planning tool for culturally specific organizations. This is the first of its kind and holds promise to support and deepen organizational capacity for amplifying the distinct assets of culturally specific organizations, which have been confirmed by service users as holding heightened value to their lives. The promise for improved client outcomes has been strengthened by this pilot study.
Culturally specific organizations have been missing out on the racial equity and cultural responsiveness initiatives that have been prominent in nonprofits and government, both due to the absence of relevant assessment tools, as well as discourses within these initiatives which have overlooked the sector of culturally specific organizations and subsequently provided a competitive advantage to culturally responsive organizations. This paper reports on the development of a culturally specific organizational assessment, and the results of a four-site pilot study of the tool. The assessment tool is based on the results of a Delphi and Consumer Voice two-part study into the assets of culturally specific organizations and their valuation by clients. Developed with the input of four organizations serving a range of communities of color, we have confirmed that the Successful Families Tool achieves its objectives (centering primarily on creating actionable insights and quality improvement plans). Additional benefits emerged from the pilot's participants: that an evidence-base for the organization's assets is initiated, that organization-wide identity is strengthened, that staff have been energized by relevant equity dialogues and relationship deepening, and that motivation for research and evaluation that captures the fullness of the organization's impacts be undertaken. A sampling of tool questions and standards is included, along with listing of its ten domains.
coincides with the emergence of mental health symptomatology and solidified sexual and gender identity . As a result, understanding the role of religion and spirituality on mental health and careseeking among adolescents and emerging adults is crucial. Canada's Black population is significantly younger than their counterparts, with a median age of 29.6 years compared to 40.7 for the population as a whole . Among Canada's 10.5 million Black residents, nearly 86% identify as religious, varying greatly in religious affiliation. 26% of Black Canadians identified as Christian, followed by Catholic , Muslim and Pentecostal . The diversity in religious affiliation reflects the ethnocultural diversity of Black Canadians. Black Canadians come from approximately 125 countries of origin and represent nearly 200 ethnic and cultural groups . Some Black Canadians can trace their history in Canada back to the 1800s, while others have immigrated from the Caribbean and Africa in recent waves of migration . Across these diasporas, the mental health of Black youth in Canada has increasingly gained the attention of communities that have advocated for increased access to care and mental health supports . However, little research has focused on the experiences of Black Canadian youth. Black youth in Canada may have unique experiences that differ from their counterparts in other countries with a high level of immigration, such as the United States and the United Kingdom , because of Canada's emphasis on a "multicultural mosaic" ; Thus, some youth remain strongly affiliated with their cultural communities and religious organizations, and their accompanying social mores, post-immigration. The diversity among Black Canadian youth warrants specific exploration into their understanding of mental health and the strategies they feel should be employed to improve their experiences seeking mental healthcare. This article provides an overview of how Black youth, their family and community members and service providers in Canada understand and describe Black youth's experiences with their mental health and wellbeing, explicating how Black youth feel about the impact of religion and spirituality. We conclude by sharing suggestions that mental healthcare providers and religious leaders can use to support youth who wish to see religion and spirituality incorporated into their care. --- Black Youth and Access to Mental Healthcare Evidence is limited; however, existing data suggest that Black Canadian youth have disproportionate rates of mental illness compared to their peers. While 20% of youth experience symptoms of mental distress , Black youth are affected disproportionately and have experienced increased distress due to the COVID-19 pandemic . Black youth face additional factors associated with developing mental illness, including a history of colonization, poorer access to resources , and systemic anti-Black racism , defined as prejudice, attitudes, beliefs, stereotyping, and discrimination directed at people of African descent . Regardless of their ancestry, all Black youth face difficulty accessing the Canadian mental healthcare system . While healthcare in Canada is often considered universal, mental health and addictions services are delivered privately and publicly in a complicated and disjointed system . Canada's mental healthcare system has been criticized as inadequate and inappropriate , and Black youth face difficulties accessing care due to structural challenges such as wait times and poor access to mental health service providers as well as barriers related to finances and geographical distance from services . Unfortunately, Black youth also experience ABR within mental healthcare settings, further complicating access to care . Thus, structural barriers to care for Black youth are amplified by a mental healthcare system ill-equipped to address the effects of ABR coupled with a lack of culturally responsive care . --- Religion, Stigma, and Mental Illness in Black Communities Religion has been an important facet of cultural life in global Black diasporic communities before chattel slavery , and historically, mental health and wellbeing were closely aligned with religion and spirituality . Religious organizations are considered particularly influential in African diasporic communities . The church attends to the various needs of its patrons, forming a pillar of the community that is responsive to its emotional, spiritual, physical, and psychological needs . Similarly, in African and Caribbean immigrant communities, religious organizations are sources of socialization that provide support in new environments and frame community membership . For Black Muslim youth, the mosque holds similar importance and often delivers programming responsive to its community's needs . The religious and cultural beliefs of the youth's diasporic communities may impact their conception of mental illness. For example, in some countries on the African continent, mental illness is viewed from a communal lens, in addition to biomedical and social structural explanations. This lens is commonly invoked by the term Ubuntu, where individuals' mental health struggles are viewed in relation to their broader relationships with others . In Islam, there is an awareness that symptoms of mood disorders and anxiety disorders are a cause for concern that warrants additional support, as noted by the prevalence of 'duas' or prayers that can support oneself during these experiences . Conversely, mental illness has historically been stigmatized and labelled as taboo in many communities , and conceptions of 'madness' and mental illness are often rooted in religious imagery, particularly when discussing hallucinations and psychosis . For example, a study exploring the perceived causes of mental illness in Muslim outpatient clients found that nearly 43% attributed their symptoms to Jinn, supernatural beings in Islamic folklore . Care seeking for mental illness was also viewed negatively in African American communities, and therapy was seen as something that was only accessed by those who were "sick" or "crazy" . Deeply religious people may view therapeutic help as "unspiritual," , an association that may be difficult to combat. Instead, African Americans were more likely to rely on coping mechanisms such as prayer . At the same time, psychological practice in Europe, the US, and Canada in the 19th century began to associate religiosity with hysteria and neurosis, signalling a division between religiosity and therapeutic care that would last for more than a century . As a consequence, belief in spirituality and religion was pathologized and, coupled with previous experiences of racism and discrimination, made African Americans less likely to seek out mainstream mental healthcare . Black communities, including Muslims , remain historically marginalized and excluded from mental healthcare. While there is no causal link between religiosity, stigma, and care seeking, it is possible that the alienation of religious African Americans from formal therapeutic care coincided with increased stigma towards formal care seeking for mental distress. Similar barriers may be a factor for Black Canadian youth. --- Religiosity's Impact on the Mental Health and Wellbeing of Black Youth Evidence about religiosity's impact on the mental health and wellbeing of Black youth is conflicting. Research has shown that religion, spirituality, and religious institutions can be facilitators of mental healthcare and positive mental health . Religiosity and religious affiliation can provide meaning and purpose and a sense of belonging . In addition, spirituality and faith are associated with improved mental health outcomes . Among African American youth, religiosity is linked to lower aggression and risky behaviour . Religion and prayer serve as coping mechanisms for life's stressors, particularly for Black youth who face added challenges due to racism . Prayer benefits mental and behavioural health and improves psychosocial adjustment . Religious affiliation can bridge access to care for youth who may have difficulty obtaining care otherwise. Religiosity has been associated with seeking treatment for mental health challenges among African American youth in the US . African Americans seek assistance and guidance from religious organizations and clergy . Moreover, religious organizations are often used as a source of mental health support for populations with inadequate access to care, and these organizations frequently make referrals to traditional mental health supports, such as social workers , particularly for Black youth . Conversely, religion presents challenges for Black youth. As youth's identities develop during adolescence , their religious community's strong ideals and mores can cause tension and hinder care-seeking . In their study, the Breland-Noble et al. found that African American youth in the US had mixed feelings about how religion and spirituality impacted their mental wellbeing. Indeed, youth felt that religious communities relied on spiritual solutions to mental health challenges, which alienated youth seeking traditional forms of care. Religious affiliation presents more significant challenges for youth who identify as Two-Spirit, lesbian, gay, bisexual, transgender, queer/questioning and other diverse or marginalized sexual orientations and gender --- Rationale, Aim, and Research Questions The Pathways to Care research project, led by Black Health Alliance, intended to explore the barriers and facilitators to accessing mental healthcare for Black youth in Canada. Upon an initial exploration of the data and multiple discussions between the PTC team and the Youth Action Committee members, we were led to explore religion and spirituality as additional dimensions of mental health and wellbeing. Religion is an important aspect of culture for many Black youth in Canada who have varied diasporic experiences. Understanding how youth do or do not incorporate religion and spirituality into their practices is important to ensure that service providers and religious leaders know opportunities for incorporating religion into care. Thus, our research questions are How do Black youth understand, describe, and discuss mental illness? What factors impact Black youth's mental wellbeing in relation to religion from the perspective of family and community members and service providers? How does religion impact Black youth's mental health and wellbeing? And What implications exist for mental health practitioners and religious leaders who wish to provide culturally responsive care that considers religiosity and spirituality for Black Canadian youth? --- Method The PTC project is a five-year community-based participatory research project that aims to understand the access needs of Black youth in the mental healthcare system. A partnership between five community-based organizations, the project was heavily rooted in CBPR . As a CBPR project, we worked with numerous community stakeholders and committees to drive the overall research project. The PTC project is foremost community driven, action-oriented and exploratory, thus a generic qualitative approach not bound by specific theoretical assumptions was followed . Nevertheless, our work is partly informed by the social constructionist tradition to inform how we view how religion and culture shapes the experiences of mental illness for Black youth. In particular, how youth's experiences of religion and culture are shaped under 'particular conditions' such as familial histories of racism and colonization . The PTC study was conducted via focus groups to elicit information about participants' attitudes towards mental health and illness and perceptions around access to care in the mental healthcare system in Ontario. Focus groups were ideal for this study because they foster communal identities . A religious climate antagonistic to 2SLGTBQ + people was correlated with excessive alcohol use and other risky behaviour among queer youth . Historical and cultural understandings of religion can lead to tension with self-expression and negative self-perception . Youth may feel alienated from religious organizations that do not affirm 2SLGBTQ + identities. Conflict between religion, spirituality, and sexual identity, has made 2SLGBTQ + youth wary of religious organizations, but those effects are mediated when youth belong to religious spaces that affirm samesex relationships . However, a dearth of information remains on the spiritual and religious needs of Black Canadian youth. In addition, further attention to the religious and spiritual needs of Black 2SLGBTQ + youth is required. Evidence also suggests that religion impacts stigma and care-seeking among Black youth. Stigma and shame are prominent barriers to care that are present both among African American and Black Canadian youth as well as youth from other racial and ethnic backgrounds . The stigmatization of mental illness was often communicated to youth through caregivers and other members of their social support networks. Planey et al. identified that stigma, including the fear of being labelled, negative associations with psychotropic medications, and the social perception of mental illness, prevented African American parents from seeking care for their dependents. As African American youth often first sought help through their family and support networks, the perception of stigmatization led to the prevention, delay or cessation of seeking formal therapeutic services . Unfortunately, very little research exists on the experiences of Black Canadian youth that considers their ethnoracial, sexual orientation and gender identities in relation to religion, mental health, and access to services. Religious competence is cultural competence and considering the role of religion and spirituality has gained attention as necessary to combat the underutilization of mental healthcare services . Moreover, few studies have explored religiosity and cultural responsiveness in mental healthcare provision to Black populations in Canada. Understanding how Black youth conceptualize religion can provide insight into how to meaningfully work with this population and increase access to care. religion's usefulness to mental healthcare and experiences of how religion intersected with culture and their experiences of racism. Given our diverse backgrounds, how these realities were shaped and influenced by our levels of religiosity, our opinions of religion, and our notions of youth mental health experiences were also considered. Moreover, we carefully appraised how our experiences and motivations informed the results of this article, ensuring the results remained focused on participants' perspectives and provided a critical analysis. --- --- Recruitment PTC staff members recruited participants using convenience sampling and local liaisons with solid connections meaning-making among participants, allowing findings to be affirmed by others . The study took place in six regions in southern Ontario: Ottawa, Toronto and the Greater Toronto Area , Hamilton, Waterloo and Kitchener, London, and Windsor. Twenty-three focus groups took place between May 2020 and August 2021. Except for Toronto and Windsor, three focus groups with Black youth, family and community, and service providers were facilitated in each region. In Toronto, additional focus groups were done with service providers, 2SLGBTQ + Black youth, Black youth with experiences in the justice system, and PTC's YAC. In Windsor, an additional focus group with Black Francophone youth took place. Specific focus groups were conducted with the additional youth communities so that further research could be undertaken with historically marginalized communities. Although attention was placed on specific demographics within these additional focus groups, these same demographics of youth were also found amongst the larger participant sample. For example, one closed focus group was offered for Black 2SLGBTQ + youth. However, Black 2SLGBTQ + youth appear as participants in other non-closed focus groups as well. --- Social Location of Authors As the authors of this manuscript, we are a collaboration of Black contributors who all have an expressed interest in the mental health and wellbeing of Black youth in Canada. Some of us are staff members of the PTC project, while KA is a member of PTC's YAC. As a CBPR project, writing this article as a collective was an intentional choice to ensure the voices of youth were heard and amplified throughout the PTC project. We all identify as Black and, more specifically, are members of the Afro-Caribbean and African American diaspora in Ontario. Members of our collaboration also identify as 2SLGBTQ+. We come from various experiential backgrounds, including academia, direct service provision to Black youth, and being young people ourselves. Our religious and spiritual identities vary, including Christianity, Islam, and Atheism. We also range from identifying ourselves as devout and practicing to secular and non-practicing. During the analysis and writing phases of this article, the research team met bi-weekly to engage in reflexive discussions that explored our experiences, biases and assumptions related to religion and mental health to locate our research work within the same "world" and "framework" that we would be theorizing . The research team discussed personal and familial experiences with religion and mental health, our judgments of met the inclusion criteria and understood the purpose of the focus groups. As well, the research team provided potential participants information about the length of the sessions, the subject matter, participants' right to free and informed consent, and strategies for ensuring their anonymity via Zoom. Researchers provided potential participants with the demographic survey and informed consent form via email. Each participant was provided an honorarium of 40 CAD for their to their respective communities. Participants who were not recruited through community liaisons were contacted via e-mail through connections with mental health organizations and through social media. Except for PTC's YAC members, researchers did not have a prior relationship with participants. All participants received a phone call from PTC's Researcher prior to the focus groups to ensure they --- Data Collection and Analysis Focus groups were facilitated by PTC's Researcher, except for the Francophone Black youth focus group in Windsor, which PTC's Bilingual Health Promoter facilitated. Sessions took place over Zoom, which allowed participants to use a pseudonym and keep their camera off to support confidentiality and anonymity. Focus groups lasted between 65 and 123 min, with an average of 106 min, and had between two and 12 participants. Questions were semi-structured and created in partnership with the YAC to ensure their interests were explored. Focus group questions probed community perceptions of mental health and illness, accessing mental healthcare, and potential improvements to Ontario's mental healthcare system. Although focus group questions focused primarily on access to care, participants discussed cultural perspectives on mental health, including religion. Focus groups questions for the Black youth focus groups can be found in Appendix A. The PTC Researcher and consultants transcribed interviews with the assistance of Otter.ai, a transcription software. PTC's Researcher also analyzed data using thematic analysis in Nvivo , where findings were organized into codes and themes and refined until they formed a cohesive 'story' . Findings were corroborated through member-checking done with every focus group participant. Member-checking was conducted via email which allowed participants to share their feedback in a manner that allowed the researcher to keep track of what was being shared and what gaps, if any, arose. Summaries that highlighted the findings from their specific focus group and the overall project were provided to participants with requests for feedback to ensure the findings reflected their experiences. time and knowledge. Participants received the entire honorarium if they attended any part of the session. As the aim of the project was to determine access needs in six regions across the province with perspectives from Black youth, service providers and family and community members, focus groups took place when enough participants had been recruited to ensure multiple perspectives. Focus groups were conducted with Black youth, service providers, and family and community members, respectively. Except for Black youth, service providers and family and community members did not have to self-identify as Black. However, they did need to live or work in the region of interest and have a specific focus on the mental healthcare access needs of Black youth. Youth participants needed to live in an area of interest, self-identify as Black and selfidentify as youth. When determining eligibility for participation in the youth focus groups, participants were able to self-identify as youth in consideration of r the diverse determinants that can impact a person's life stages, including intersectional identities and varying access to resources. This method allows a participant to identify, based on lived experience, whether they were youth or not. Lei and South write that as Black youth age, they are more likely than white youth to stay in their childhood home and are more likely to return home sooner if they do move out. Living independently is generally viewed as a significant step in the transition from youth to adulthood which may help to explain why Black people self-identify as 'youth' into their late twenties and inaccessible, making some individuals rely on religion as a proxy instead of a complement to optimal mental health. The findings highlight potential strategies religious leaders and mental health practitioners can employ to bridge the gap between religion, spirituality, and mental healthcare. The subsequent sections outline these three themes in more detail. The Stigma and Taboo Nature of Mental Illness Ramona's quote highlights that the perceived severity of different mental illnesses impacted the level of stigmatization, where bipolar disorder or schizophrenia were more negatively viewed, however, it resulted in the stigmatization of all mental illnesses. Ultimately, the way Black communities, including youth, discuss or avoid discussing mental health and illness served as a barrier to accessing timely and culturally safe healthcare and social support. --- Intergenerational Conceptions of Mental Illness Participants articulated similarities and differences regarding the way participants and other older family members conceptualized mental illness. In many ways, Black youth had similar beliefs to older family members, which youth attributed to how understanding of mental illness was passed down and socialized between generations. Lack of faith, insufficient prayer, and believing one was cursed, or 'mad' were cited as reasons for mental illness. Participants recognized conceptualizing mental illness in this way could lead to a failure to notice and appropriately treat mental illness. For instance, one participant explained: "I think when it comes to religious communities and this goes back to our parents' generation, I know a lot During manuscript preparation the authors revisited the existing codes with the research questions in mind and discussed how the themes should be organized. In keeping with a generic qualitative approach, no specific theoretical application was used. Instead, the authors used an inductive approach to provide a rich description of how participants interpreted and constructed their experiences . Codes and themes were re-examined and the research team reflexively and critically contemplated each quotation in relation to the subject matter, researcher perspectives and usefulness to the community. Though analysis used a generic approach, the authors also considered familial power dynamics, Black communities' experiences of racism and colonialism and the intersecting experience of multiple identities as those were priorities for the PTC project. --- Results The purpose of this study was to provide insight into diverse Black Canadian youths' relationship with religion, mental health and care-seeking from the perspectives of Black youth, family and community members and service providers. An additional aim was to identify implications for mental health practitioners and religious leaders who wish to increase access to culturally responsive care for Black Canadian youth. The following quote encapsulated many of the findings: "…About religion? And, I agree completely, because it can be so horrible… Sometimes when people don't have the money or access to mental health, we try to use religion as the proxy but I also think that religious leaders can be a great resource in normalizing and talking to people about mental health-if they would stop talking about praying to solve it-to say this is a real thing." Three themes emerged from the focus groups: stigma of mental illness, how religion influences Black youth's mental health, and implications for practice for service providers and religious leaders. Further, these discussions involved cultural understandings of mental illness as taboo, madness, a curse, and a heavily stigmatized condition. Additionally, delineated are the challenges 2SLGBTQ + Black youth experience when reconciling their faiths with their mental wellbeing. Participants discussed some of the positive impacts of religion, namely its role in caring for one's mental health and how it serves as a social and cultural pillar in many Black communities. Participants expressed concern when explaining how barriers rendered mental healthcare disclosed being 2SLGBTQ+. Explaining how mental illness can be attributed to one's identity, a participant stated: "Like people have these associations, like it's the demons, it's the devil, it's this, it's that. And when people automatically hear that you are queer within the Black community, they automatically associate that with mental illness." The direct link between the intergenerational misunderstandings of mental health among Black communities and their taboo nature directly affects Black 2SLGTBQ + youth regardless of whether they are experiencing mental health challenges. --- The Influence of Religion on Mental Health Religion and faith are cultural cornerstones for many African, Caribbean, and Black communities; organized religion commonly serves as a point of social connection, and a means to foster resilience in the face of challenges. Moreover, organized religion and personal spirituality and practice can enhance mental health outcomes by helping youth cope with stressful situations and facilitating the formation of strong community-based social networks. When mental healthcare is inaccessible due to financial constraints, accessibility issues, or religious discrimination, religion can also instill hope and act as a proxy for culturally safe care. At the same time, culture and organized religion stigmatized mental illness. For participants, religion's ability to catalyze social connections and support individuals through difficult times was contrasted with the entrenched cultural norms of religions, which stigmatized mental illness and discouraged professional treatment in favour of faithfocused activities. When they discussed the harmful effects of using religion as a proxy for care. Participants described the way that religion was used to discourage seeking care: …So I grew up Christian, and some of my family members when they would hear that I'm like going to therapy or I'm having…depression or anxiety. They would say like to me, "oh, that doesn't really make much sense. Like, all you have to do is pray or you're not praying enough or you're not having faith in God," or "God has a plan" and stuff like that…It didn't actually help me not have depression or anxiety, like I would pray but it wouldn't fix it right away. Here, a respondent shared the dysphoric experience of engaging in therapeutic activities to support their mental of people around my age group that think the same way. So…basically I was saying my parents had their issues, but I know a lot of people my age as well that are also religious in general who kind of like, blame mental health on a lack of faith and they say if you prayed more, you would feel better." At the same time, intergenerational differences in conceptualizing mental health were apparent in the phrases used to describe mental illness and how discussions of mental illness were received by older family members. Black youth noted when they showed symptoms or discussed their mental health challenges, their symptoms would be minimized, and they were accused of having 'gone mad' or being cursed. One respondent said: "I think that's the problem like we may be going through it ourselves and not even know that we are going through it, just because of the biases. …You know generational stuff where they blame mental illness on somebody's 'mad', because they are cursed or whatever." Though the reasons given for mental illness were similar between generations, it appears that the conversation about mental illness was different. The experience of having existent mental health concerns ignored and demonized creates a space where mental health conditions are stigmatized, and any further expression of mental health issues may be silenced. --- Black 2SLGBTQ + Youth and Religion Further to the discussions surrounding the cultural understandings of Black youth and their experiences with mental healthcare, Black 2SLGBTQ + youth experience an added layer of difficulty when navigating mental health services. Youth experience stigmatization due to intergenerational misunderstandings and the lack of acceptance of their sexual orientation and gender identities. Two things arise from this experience; in one instance, Black youth are having their mental health concerns dismissed and attributed to the complexities of their sexual orientation and gender identities. Black youth's mental health concerns go unaddressed because the stigma surrounding their intersectional identities is targeted. Youth are told once they "handle" their diverse gender and sexual identities, they will be relieved of their mental health concerns. In the other instance, Black youth are misdiagnosed with mental illness solely due to their sexual orientation and gender identities. Black neurotypical youth may be labelled as mentally ill because they you really feel like you can talk to a lot of different people but I don't know it's kind of hard for me -I'm trying to think -for me at least I met somebody at this church that I went to and she was a leader the community and she did a lot of volunteer work and I did volunteer work with her in high school and she was the first person ever in church that I heard talk about self-love." Religion's ability to foster a safe space where individuals can speak freely, receive social support, and hold discussions was emphasized. Due to the high degree of reverence and influence religious leaders possess, they are well-positioned to normalize mental illness through their theological approach and integrate messaging highlighting mental health literacy and treatment in places of worship. --- Improving Care for Black Youth Respondents expressed an inclination towards incorporating spirituality into mental healthcare in two ways: strengthening the religious and spiritual lens through which mental health practitioners may be able to work and improving the mental health literacy of faith leaders. --- Mental Health Practitioners Mental health practitioners having a specific faith-based skill set would allow service providers to use spirituality and religion, where appropriate, to provide care to clients who request this allowing them to better support Black youth. Participants commented on encouraging practitioners to have some knowledge of various religions and spiritualities that would allow them to better connect with youth upon request. In particular, service providers noted that religion and spirituality were important to clients and that they had to be able to navigate that. When explaining the value in understanding the diversity in spiritual beliefs, one participant expressed: "Mental health is definitely something that everyone has, because it's your mind and how it's moving and thinking and working…Whereas spiritual health, I think you have to have some spiritual connection with someone, somebody, some God… Even if they don't say, you know, I'm a Christian, or I'm a Muslim, or, you know, whatever that is, they still, you know, may say, thanks to the higher up. So, in terms of that, I think that they collide best when you understand that, just because you're having a mental health issue, doesn't mean that whoever that spiritual person is that you worship has been taken away or has forgotten about health, while at the same time feeling shame for not relying on their religion to attain support. Even when faith may not be effective in increasing mental wellness, the stigma associated with using clinical supports still existed, due to the role that religion played in their lives. --- Religion as Important to the Individual Religion was an integral factor in participants' mental health, but they had diverse views on the importance of religion and mental healthcare. Some participants relied solely on prayer and faith to cope with mental health challenges and during times of hardship, while others perceived both mental healthcare and religion as essential aspects of caring for their mental health every day. On the subject of using religious practices as coping mechanisms, a youth participant stated: "I was gonna say that I find that prayer has been actually the most effective thing for me. In handling… those days especially since Covid." Acknowledging their need for balance between clinical and spiritual supports for their mental health care, another participant continued: "I think it's important if that's a part of your lifestyle you should definitely incorporate it and find a way to make it a very healthy part of your day-to-day life and make sure that it is helping you with your mental health but that's not the end all be all solution and it's important to get treatment beyond that…" Ultimately, the results underscored the personal role that religion, spirituality, and personal practice play in caring for Black youth's mental health. Though consensus was reached regarding the importance of spirituality in maintaining optimal mental health, Black youth recognized that incorporating these elements with clinical mental health treatments was necessary to maximize mental wellness. --- Religion as Important to Community Community and family values are integral aspects of Black identities and numerous religions. For many Black communities, religion fosters and sustains long-term social connection and emotional support amongst diverse individuals, fundamental for ensuring optimal mental health. A participant commented: "I think religion does a great job at forming a community -a strong link -people feel supported and where --- Religious Leaders Participants discussed viewing religious and spiritual figures as prominent leaders in their communities. They are influential and trusted members of their communities, often taking on supportive roles. An opportunity was highlighted for faith leaders to directly engage with their communities to reduce the experience of stigma among Black communities through discussions of mental health and illness. One participant suggested: "If anything truly needs to happen, that conversation needs to happen in the church realistically speaking, or the mosque. 'Cause I feel like that's where a lot of people's ideas and values come from. So, I feel if you had a pastor or whoever, leading the church or whatever, say that it's okay to be a person of God and still be dealing with mental health issues and it doesn't make you any less a person, I think that would be a really good start." . A more nuanced discussion surrounded the need for additional resources and professional development of religious leaders so they may adequately support Black youth and connect them to available supports. Specifically, participants mention building the capacity of religious leaders and establishing consistent relationships between faith-based leaders and mental health providers. When emphasizing the necessity for increasing mental health education for religious communities, one participant asserted: "…For that we have to 'edumacate'…yes that's a word today. 'EDUMACATE', the religious communities that we are dealing with illnesses and it must be treated as such or should be treated as such." . Building on the need for increased education, another participant focused on religious leaders' skills, and said: "So empowering the spiritual leaders to be able to know what mental health is and the appropriate way to handle it when somebody confides in them regarding some mental, mental health struggle." There are many opportunities that religious and spiritual communities can leverage to benefit Black youths' mental health. However, a desire for safety within religious and spiritual spaces and increased education and training for religious leaders was emphasized by participants. "I think if we are looking at holistic approaches…It's talking about recognizing that faith is very central to a lot of people, ingrained within their culture… There's informal and formal therapeutic approaches [and] that is a very great informal therapeutic approach. As a clinician you should be able to recognize it as helpful, beneficial and just as good as something else that you're recommending." However, participants were also aware that incorporating religion into care was an individual decision: "I think just keeping in mind that religion to everybody is something different, even if they're practicing under the same umbrella, the way they practice, personally, and what their own personal journey is, it differs from everybody…Obviously, it differs from people who aren't religious. So, I always feel like it's an individual decision." In this same regard, letting Black youth guide the conversation surrounding the incorporation of their faith into their mental healthcare builds Black youths' capacity to take control of their mental health supports. This creates a space for individualized care, which could mitigate the possibility of negative experiences for the client and increase the likelihood of a client returning for longer-term care. A service provider commented on the need for client initiative when broaching the topic of religion: "So the first thing I'll say is, let them take the lead, let them take the lead, let them open up that chapter. You know, not forcing it on clients, you know, I mean, they, they have the right, you know, right to, to decide what they want. So, the first thing I'll say is, you know, allow them to take the lead, and explore with them, don't assume, let them say what it is to them. Because there are some people who have had a negative experience with spirituality." Creating space for trauma-informed individualized care allows Black youth to not only reach out for clinical mental health support that is affirming of their faith, but community-centric care that is equally affirming of their mental health concerns. . Thus, the discussion of mental health and wellness must work to eliminate negative conceptions about all forms of mental illness. Stigma may influence the discussions between family members of different generations. Stigma contributes to the lack of discussion about mental illness in Black communities in the same way it would impact older adults from other cultural backgrounds ; however, the authors identified that older Black adults in the US were more likely to internalize stigma and less likely to endorse seeking care when compared to older white adults. While there was little data that explored generational differences concerning mental health illness between younger and older Black people, it is possible that older Black people may have a limited or different understanding of mental health and wellbeing than their younger counterparts or may have had little access to a mental healthcare system in their countries of origin . Moreover, some communities with longer histories within North America have experienced outright exclusion from or discrimination within the mental healthcare system, leading them to be wary of this kind of intervention . Many participants noted their family members dealt with similar challenges but went untreated and undiagnosed due to stigma and poor access to care. If family or community members are unsure of the symptoms and causes of mental illness or fear stigma, that could cause a delay in Black youth seeking appropriate treatment. Being 2SLGBTQ + complicated the attribution of the cause of mental illness, as youth's sexual orientation was considered the cause of their mental illness, a similar occurrence to 2SLGBTQ + youth of other backgrounds in the US . Youth in our study described biases attributed to "folk stories" from older family members, findings consistent with African American youth's experiences . Black 2SLGBTQ + Muslim youth also navigate the challenges of homophobia and transphobia in similar ways to Christianity, a shared experience in many monotheistic religions . --- Religion, Community and Black Youths' Experiences of Mental Illness Religion had a profound impact on Black youth's mental health and is intertwined with youth's cultural experiences. However, religion's impact on mental health was ambiguous . When youth professed to their caregivers and other family members, they were experiencing challenges with their mental wellbeing, they would be encouraged to use prayer as a remedy. Youth --- Discussion This article explored Black Canadian youths' perspectives and understandings of mental health and illness. It also sought to understand the impact of religion on Black youths' mental wellbeing and identify suggestions to increase access to care. Religion and mental health were chosen as a site of inquiry because of their importance in diasporic communities . This study demonstrates stigma's central role in impacting youth's mental health. Moreover, religion can be a direct facilitator or barrier to Black youth's mental wellbeing. Participants suggested supportive strategies to improve Black youths' safe access to mental healthcare. --- Stigmatization of Mental Illness in Black Youth This article's findings underline that mental illness continues to be a source of stigmatization for Black Canadian youth. Like Black youth in other countries, mental illness remains taboo to discuss openly with their family and community. The taboo nature of mental illness was similar for youth of Caribbean and African descent and not dissimilar from the experiences of Black people in the UK and Jamaica , highlighting a similarity across the diaspora beyond the Canadian context. In this study, youth discussed how religion was often invoked as an explanation for their mental illness. For example, mental illness was attributed to not engaging enough in prayer or being 'cursed,' which discouraged youth from speaking openly about their mental health challenges. Stigma also varied based on the perceived severity of certain mental illnesses. For instance, though still stigmatized, anxiety and depression were more acceptable than mental illnesses that presented as psychosis . Those were more likely to be attributed to spiritual causes and associated with violent behaviour. The way mental illness was discussed profoundly impacted youth who felt that these conceptualizations were unhelpful and contributed to their struggles. Youth felt isolated and feared discussing their mental health or asking for help. Mantovani et al. found that among African and Caribbean people in the United Kingdom, beliefs about the spiritual causes of mental illness carried implicit notions about the moral failings of the person experiencing mental distress. The associated stigma and feelings of shame delayed care-seeking from formal mental healthcare and made it more likely that individuals solely accessed spiritual supports that may be inadequate to address their needs . Moreover, the beliefs one has about their mental illness affects their health outcomes fraught role spirituality, organized religion, and places of worship play in the lives of Black 2SLGBTQ + youth. Participants expressed frustration due to their mental health struggles being erroneously attributed to their gender identities and sexual orientation. Participants felt that love, acceptance, and mental health support from their religious and Black communities was conditional upon 'addressing' their sexual orientation and gender identities. Numerous studies have corroborated the existence of homophobia and transphobia within some Black religious institutions. Richards cites Levy's academic work on the relationship between religion and homosexuality, noting Black churches actively encouraged congregation members to adopt traditional gender and family roles . Social support and open discussions about mental health are elusive for Black 2SLGBTQ + youth who experience marginalization and social exclusion from most faith-based spaces, society at large, and Black cultural spaces, where open mental health discussions are already scarce . Ultimately, the current study's findings suggest that despite the systemic homophobia and transphobia regularly experienced by Black 2SLGBTQ + youth, religion and spirituality remain fundamental aspects of their lives and an important factor in achieving mental wellness. When mental health service providers engage with 2SLGBTQ + youth, it is vital to acknowledge the cultural diversity in the acceptance of 2SLGBTQ + communities. However, it is also important to note nuances among cultures; multiple Indigenous nations, for example, did not historically stigmatize 'same-gender' relationships, which may be a product of Christianization and Western colonization . --- Implications Research participants shared the challenges they experienced in religious spaces and their hope for improved mental health support from religious organizations and mental health practitioners. In this regard, several implications emerged. Suggestions included improving the capacity of religious leaders to assist with mental health challenges, increasing the religiosity lens of mental health practitioners, and expanding their knowledge of Black youth who may hold multiple marginalized identities. Mental health awareness among faith-based leaders should be improved. Resources and professional development sessions would create opportunities for further education and increase capacity to better navigate mental health expressed frustration at the overreliance on religion and attribution of mental illness to a lack of prayer and adherence to religious practices, similar to African American youth . At the same time, religion and spirituality served as a meaningful way to process and cope with mental illness. Religion is deeply personal, and youth develop their own relationship with religion akin to Fowler's fourth stage of development . In the fourth stage, which occurs in adolescence, youth begin to understand their relationship with faith differently from what their community, culture, or religion has told them about faith and spirituality . Among our sample, youth had to determine how to leverage faith for their own wellbeing and saw it as something positive while recognizing faith alone may be insufficient to address their mental health needs fully. Youth rejected the idea that mental illness was caused by a lack of faith or by spiritual forces and prayer alone was the solution. Instead, they saw prayer as a tool for better wellbeing. Thus, incorporating religion into care but not relying solely on faith and religiosity is a path to providing adequate care. Religious organizations are important links to social and emotional support , particularly when Black youth face challenges accessing care due to financial, geographical, and discrimination-related barriers . Religious organizations were seen as trustworthy spaces for Black youth to seek support, and clergy were regarded as trusted sources of advice, findings echoing Taylor et al. . The positive impact religion exerts on mental health has been documented among African-American youth . Moreover, organized religion and personal spiritual practice can enhance mental health outcomes by helping youth cope with stressful situations and forming strong community-based social networks . Service use increased African-American youth who believed that their faith communities were supportive of their accessing mental healthcare . Given the positive role of religious affiliation among Black youth, it is an important site to consider for intervention. For instance, Black Muslim youth may prefer seeking care in religious spaces . To ensure they are equipped to assist youth, religious communities should understand symptoms of all mental illnesses as well as mental health first aid. --- Black 2SLGBTQ + Youth and Mental Health Due to the pervasive societal and internalized stigma faced by Black 2SLGBTQ + youth due to their intersecting identities, mental health issues are common and accessing care remains burdensome. This study's findings delineate the practices and consistent and ongoing research to improve mental healthcare praxis. Promising practices should be drawn from academic literature, input from religious organizations, and youth themselves, and used as a foundation to encourage nuanced discussions about Black youth's experiences navigating mental healthcare systems. Any initiatives that intend to increase the capacity of Black youth are most beneficial when engaged alongside fundamental understandings of the impact of anti-Black racism, the experiences of homophobia and transphobia, and recognition of the social and structural determinants of health. --- Limitations Despite best efforts, this study had limitations. As a qualitative study, the results are not intended to be generalized. However, many cultures and ethnicities are represented under the umbrella term 'Black' that may not have been adequately represented in our sample, including Afro-Latinx and Black Indigenous folks. This article explored the impact of religion on mental health and wellbeing. However, most participants practiced either Islam or Christianity, and there was a lack of meaningful representation of other religions. Thus, results may not apply to all Black youth. Recruitment was a challenge initially, and some participants were eventually recruited with the assistance of community liaisons, youth who were harder to reach or not actively engaged with community liaisons may not have participated. Many other forms of recruitment were used in addition to liaisons to ensure young people from all backgrounds were included in the study. Some topics could have been further explored in this article. For instance, there was a lack of information about solutions to the unique challenges faced by 2SLGBTQ + youth and a lack of discussion about religion's impact on addiction and substance use, which can be expanded upon significantly. There was also a lack of discussion about how communities can better support Black youths' mental health and wellbeing from a faith-based lens. After family members and friends, communities are next to notice any challenges youth may experience, and the broader community has a significant impact on youths' experience of their mental health and wellbeing . Lastly, the geographical focus of this article is Ontario, Canada. Though there were six regions focused upon for the overall research project, some regions were not represented by quotations in this article. Further research should explore the experiences of youth from across Canada beyond the six regions that were of interest in this study. To date, most 2SLGBTQ + mental health and addictions research is focused on White populations. Thus, there is a challenges youth may experience. Catholic leaders have shown promise in this regard as they have focused on community-based mental health education in support of stigma reduction and intervention surrounding misconceptions of the origins of mental illness . Generally, faith-based leaders enjoy a high level of trust within their community and are viewed as frontline mental health providers . Furthermore, the collaboration between mental health practitioners and religious leaders has been documented as an aid to clients' access to mental healthcare . These collaborative efforts should be leveraged to increase discussions about mental illness among their congregations to aid in stigma reduction and bridging the gap between religious organizations and evidence-based mental healthcare. Where warranted, religion and spirituality should be incorporated into mental healthcare practice. The practice of assessing a client's religious background during clinical assessment exists and the benefits of these practices has been documented . Educating mental health practitioners regarding the diversity of faiths among Black youth should increase their understanding and improve the level and the quality of support they can provide to Black youth who request religiosity be incorporated into their care. Moreover, Drew et al. suggest that practitioners who aim to incorporate religion into their practice in an affirming and responsive manner should aim to focus on the universality of faith and recognize that all faiths are equal, akin to the sixth stage of FDT. Resources focused on religious literacy and awareness of referral opportunities would ensure Black youth are connected to the appropriate services if they require additional support. Though many youth had positive sentiments about incorporating religion into care, it is possible that not all Black youth would wish to incorporate religion into their therapeutic practice. Mental health practitioners should be mindful of letting Black youth initiate incorporating religion into their mental healthcare, being careful to avoid any bias or undue influence on youth. Black youth are not a homogenous group. Religious practice and accessing mental healthcare services are individual experiences, fluctuating from person to person. Moreover, due to the historic harm Black 2SLGBTQ + youth have endured from many religious communities, a concerted effort must be made to centre these groups. Both identity affirming spaces and historically oppressive environments should be transparent in this process . Direct accountability, open conversations, safety measures, and further research must be undertaken surrounding the homophobia and transphobia Black 2SLGBTQ + youth have experienced directly from faith-based communities, spaces, and leaders. There is a need for community-based dearth of Black-specific studies, especially those focusing on Black trans populations. Furthermore, research explicating the relationship between faith, religion, and Black 2SLGBTQ + communities specifically is rare, with much of this research centring on White populations or other racial identities. Increased attention should be paid to the disparities of mental health issues amid common challenges such as gender dysphoria, hormone replacement therapy, surgery, and medical care costs. --- Conclusion Awareness of mental health as an integral aspect of maintaining wellbeing has increased in Canada. However, little attention has been paid to the mental health experiences of Black youth. As is the case for many communities, religion is a cultural facilitator that supports Black youth's mental wellness; however, religion's impact on Black youth's mental health has not been explored extensively. Focus group data from Black youth were analyzed and provided insight into how culture shapes differences in intergenerational understandings of mental health and illness. Moreover, discussions centered on the impact religion has on Black youth's mental health and the heavily stigmatized nature of mental illness partially rooted in cultural misunderstandings. Black youth shared their perspectives on potential strategies religious leaders and mental health professionals can employ to provide culturally safe care. Religious leaders, mental health professionals, and Black communities need to collaborate to strengthen mental health initiatives and advocate for youth-led longitudinal research to explain why religion plays a pivotal role in Black youth's mental health. --- Data Availability Data is not available. Code Availability Code availability is not applicable to this project. --- --- Authors Contribution Tiyondah Fante-Coleman: Conceptualization, Methodology, Formal Analysis, Data Curation, Validation, Writing , Project Administration, Funding Acquisition. Kristen Allen: Data Curation, Writing Melissa Booker: Conceptualization, Formal Analysis, Writing , Project Administration. Ameerah Craigg: Conceptualization, Formal Analysis, Writing , Project Administration. Fatimah Jackson-Best: Conceptualization, Methodology, Writing , Project Administration, Funding Acquisition. --- ---
Religiosity, spirituality, and mental health are important aspects of cultural diversity that have increasingly gained the attention of policymakers and care providers as important to psychological practice (Parker et al., 2023). Briefly, religiosity is defined as the belief in a higher power, adherence to the 'tenets of a prescribed system of faith' and participation in devotional practices related to that belief system (Mattis & Mattis, 2011, p. 126). Conversely, spirituality is a more loosely defined belief in the sacredness of life and the pursuit of a life of virtue (Mattis & Mattis, 2011, p. 126). Religion can provide a basis for a shared understanding of how to relate to one's community and impacts individuals sociologically, politically, socially, and psychologically (Mattis & Mattis, p. 125). Thus, religiosity and spirituality may be particularly important during adolescence (Parker, 2010), an important developmental stage which often Tiyondah Fante-Coleman
Introduction To see a World in a Grain of Sand And a Heaven in a Wild Flower, Hold Infinity in the palm of your hand. And Eternity in an hour. -William Blake Polarization in American politics has been extensively documented and analyzed for decades, and it became all the more apparent in the 2016 presidential election, with Trump and Clinton depicting two radically different pictures of America and targeting "two different Americas". 1 According to a survey by the Pew Research Center, only 8% of Democrats and Democratic-leaning independents approve of Trump's job performance during the first month of his presidency, as compared to 84% approval rate by Republicans and Republican leaners. 2 A better understanding of the polarization phenomenon is urgently called for. Twitter played an important role in the 2016 U.S. presidential election. All the major candidates including Donald Trump, Hillary Clinton, Bernie Sanders and Ted Cruz, have millions of Twitter followers, to whom they can easily reach out to. Candidates formulate issue policies, attack rival candidates and gauge the public opinions via 'likes' [34] over Twitter. Some of the candidates' tweets have even entered into the Democratic and the Republican debates. After winning the election, Donald Trump himself commented that tweeting "is a great way of communication" [30]. In his book Our Revolution, which reflects on the 2016 presidential campaign, Bernie Sanders suggests that one of the reasons why his campaign did well is the campaign team's success with social media [28]. One opinion shared by both Trump and Sanders is that having a large number of followers on Twitter is an invaluable campaign asset [30,28]. Naturally, being able to distinguish between Trump followers and Clinton followers and understand why individuals choose to follow one candidate but not the other becomes important. In this paper, we take a first step in analyzing polarization of the public on social media. We treat polarization as a classification problem and study to what extent Trump followers and Clinton followers on Twitter can be distinguished. Our work differs from previous research in two different ways. First, previous work relies on expert-designed questions that have explicit political intonation. Our work, by contrast, tries to gauge one's Twitter following inclination by sifting through their daily tweets, profile images and posted pictures. Second, previous studies focus exclusively on American citizens and rely on small-sized surveys. Our work, boosted by the international reach of social media, includes individuals from all around the world and is several magnitudes larger than any survey-based studies. We apply LSTM to processing tweet features and we extract visual features using the VGG network. Combining two sets of features, our model attains an accuracy of 69%, indicating that the high degree of polarization recorded in surveys has already manifested itself in social media. Our contributions can be summarized as follows: -We analyze the everyday language and pictures of Trump followers and Clinton followers and examine their high-level differences. -We study political polarization from a completely new, non-invasive and more challenging angle that at the same time covers a larger portion of the population. -We have made our data publicly available to facilitate replication and stimulate further analysis. --- Literature Review Earlier works have studied the increasing polarization of American politics at both the elite level [10,21] and the mass level [3,5,7]. Druckman et al., in particular, study how elite partisan polarization affects public opinion formation and find that party polarization decreases the impact of substantive information [6]. Social clustering, the opposite side of polarization, is analyzed in [22,1]. We contribute to this literature by analyzing polarization at the public level on the social media site Twitter. There also exist a series of social media studies on the 2016 U.S. presidential election that are the inspiration of ours. The social demographics of Trump followers and Hillary followers are analyzed in [35] using exclusively profile images. Again using profile images, [33,31] further tracked and compared the 'unfollow' behavior of Trump followers and Hillary followers. [37] and [40], on the other hand, analyze the tweets posted the presidential candidates and draw inference about the followers' preferences based on the observed number of 'likes.' Our work follows this line of research. Compared with previous studies, we utilize both text information and images. Recursive neural networks , in particular its variant Long Short Memory Networks [12], have been very successful in modeling sequential data [43,23], with wide applications in text classification [16], especially in sentiment analysis [14,19]. A recent study [27] that is most related to ours uses word embeddings and LSTM to classify as either Democratic or Republican the social media messages posted by people who are known to be either Democrats or Republicans. Our study, by comparison, is more challenging as we attempt to capture political leaning among ordinary Trump/Clinton followers, who may not be Democrats or Republicans and may not even be American voters. Deep convolutional neural networks , on the other hand, have proven extremely powerful in image classification, usually reaching or surpassing human performance [29,11,36]. There exist quite a few studies that analyze selfies and other images posted on the social network [4,42]. In particular, researchers have attempted to capture demographic differences between Trump followers and Clinton followers by examining exclusively the profile images [35,33]. Our work analyzes the same profile images to detect Twitter following inclinations from these images. --- Problem Definition We define the problem of measuring polarization on social media as a classification problem: whether the individual under study is following Trump or Clinton. The highlevel formulation is Pr Pr where Tweet and Picture are two sets of features and the classes of Trump and Clinton followers are balanced. Tweets and pictures that exhibit a low level of polarization will bring accuracy close to 0.5, whereas a high level of polarization on social media could push accuracy substantially over 0.5. Note that follower is a rather weak concept: it implies neither support nor opposition. At a minimum, it suggests interest. We are acutely aware that polarization might be too strong a word to be associated with Twitter following which is technically just "one click away" [38]. Referring back to William Blake, "to see a world in a grain of sand," we strive to detect traces of polarization as millions of individuals cluster around two most polarized candidates. --- Data and Preprocessing On May 8th 2016, Donald Trump had 8.02 million followers and Hillary Clinton had 6.18 million followers. To collect ground-truth data, we first use binary search to identify and remove individuals who were following both candidates and second we randomly select 3905 individuals who are following Donald Trump but not following Hillary Clinton and 3668 individuals who are following Hillary Clinton but not Donald Trump. In order to make our classification task easier, we do not select individuals that were following both candidates 3 . We choose to collect data from a pre-election date because this will partially insulate our study from the effect of Trump winning the election and subsequently becoming the President. The data collection period is reported in Figure 2. The selected individuals in turn serve as seed users, and we collect their profile images, tweets and posted pictures. While each individual could only have one profile image, the number of tweets and posted pictures is virtually limited. In Table 1, we present the summary statistics of the data used in this paper. Compared with questionnairebased studies, which have been the norm, our approach is substantially more subtle and voluminous. --- Tweets Tweets constitute an integral part of our data source. From these tweets we attempt to detect signs of Twitter following inclination. Compared with questionnaires where the surveyed subject takes a passive role and answers a limited number of carefully crafted questions, tweets represent the spontaneous flow of emotions, ideas, thoughts and events. For example, in what follows we show two questions that are typically used for the study of political polarization [13]. Question 1: A. Government is almost always wasteful and inefficient. B. Government often does a better job than people give it credit for. Question 2: A. Poor people today have it easy because they can get government benefits without doing anything in return. B. Poor people have hard lives because government benefits don't go far enough to help them live decently. Answers to these questions are then transformed into binary values and their mean value is then used to represent an individual's political leaning between left and right. By comparison, our text data are substantially subtler. Below are four tweets posted by followers of Donald Trump and Hillary Clinton: @markhoppus how much you gettin an hour out there? @wizkhalifa like when you finally release your load into the sock RT @somizi: Topic at church: WISDOM. With it u will be able to survive anything anywhere @allinwithchris My mom actually went to high school with Dick Cheney in Wyoming. So he is "from there" -just not Lynn. :-) @afc33125: OK ALREADY It's time to CUT OFF #Christie's FREE AIR TIME!!!!!! To process these tweets, we first tokenize the text using Python's nltk.tokenize library which is able to preserve punctuations. An illustrative example is reported below: Original tweet: Today is the anniversary of Congress' most deplorable act, an apt day ponder what a petty, partisan, tribal, prick @morning joe is. After tokenization: Today is the anniversary of Congress ' most deplorable act , an apt day ponder what a petty , partisan , tribal , prick @morning joe is . The summary statistics of the tweets after tokenization is reported in Table 2 and the Figure 3 shows the distribution of these tweets for each group. It can be observed that while Donald Trump is usually thought of using short and easy-to-understand language, his tweets are statistically longer than Clinton's. Interestingly, the tweets posted by Clinton's followers tend to be longer than those of Trump's followers. Second, we use a pre-trained word embedding [25,15] to translate each token into an array of dimension 25 and 50 respectively. Word embeddings map words into a higher dimensional vectors that can capture syntactic and semantic patterns and have been widely used in text classification tasks [27,18]. To overcome the limited length --- Profile pictures With the recent success of deep convolutional neural networks , profile pictures and selfies have emerged as an integral data source for understanding individuals' demographics, sentiments and habits [4,42,36]. In particular, several studies of the 2016 presidential election have demonstrated the efficacy of using images for modeling political events. [33] studies the unfollowing behavior of men and women, and it relies on a neural network to infer individuals' gender. So does [32], which studies the effects of the 'woman card' controversy. As each one is confined to having only one profile image, we are able to collect 6,052 profile images. We will attempt to make predictions of one's Twitter following behavior based on the deep features in the these profile images. --- Posted Pictures Besides profile images, we also collect pictures posted by the seed individuals to train our integrated LSTM-CNN model. In total we have 220,000 posted pictures. In order to have a better understanding of these images, we first use the VGG neural network to extract deep features. Then we use k-means to cluster these images and use the silhouette coefficient to set the proper number of clusters to 27. We subsequently merge the clusters that we judge to be of the same category and eventually we get 24 clusters. For each cluster, we are able to label it according to the images therein. The names of these 24 clusters and the associated numbers of images are reported in Table 3. We notice that the two dominant clusters are text and people indoor respectively and that they are several times larger than the smaller clusters such as food and animal. This indicates that Trump followers and Clinton followers are most likely to post pictures that fall into these two categories. Figure 4 shows that top clusters from our clustering result. Besides the large variation in cluster sizes, we further explore with-in cluster differences between Trump followers and Clinton followers. In Figure 5, we show the distribution of images for Trump followers and Clinton followers separately. We observe, for example, more images fall into the sports cluster and the car cluster for Trump clusters. At the same time, more crowd and cartoon images are posted by Clinton followers than by Trump followers in relative terms. To test for the statistical significance of these differences, we use score test [33] to each cluster. The test results suggest that Clinton followers have a statistically higher representation in leader & speaker, table, crowd, catoon, suit & tie, and female. Trump followers have a statistically higher representation in sports, vehicle, screenshot, round object, food, and scenery. Differences in the other clusters, including the top two clusters, text and people indoor, are not statistically significant. Figure 7 at the end of our paper summarizes our test results. Fig. 5: The distribution of the 24 clusters for Trump followers and Clinton followers. Notice that the weight on the sports cluster is much higher for Trump followers than that for Clinton followers. The opposite holds for the crowd cluster, the cartoon cluster and the female cluster. These variations in distribution among clusters offer us some first evidence that posted pictures can be useful for detecting Twitter following inclination. --- Experimental Setup Our experimental design consists of four steps. First we classify tweets only, second we classify posted pictures, third we classify profile images, and fourth we integrate the two using a fusion model. --- Tweet -based Classification We first use a pre-trained word embedding [25] to transform the tokens into word vectors. We then set the number of timesteps to 150. Super-tweets that were shorter than 150 are padded with vectors generated from a normal distribution with mean 0 and variance 0.1. For super-tweets longer than 150, we only take the first 150 word vectors. In this way we transform each super-tweet into a matrix of dimension D × 150. These matrices in turn serve as the input of our LSTM network. To identify the best performing model, we set the dimension of the hidden state to 100 and 200 alternatively. To link the outputs of the LSTM cells to the class label, we experiment with using the output of the last timestep, which has the same dimension as the hidden state, and using the mean output of all the timesteps [9]. The highest accuracy achieved by this model is 67.9%. Next we compare the performance of SVM with LSTM. Following [18,41], we compute the vector representation of a super-tweet by averaging all the word vectors contained in the super-tweet. Given the padding and truncation operations discussed above, in effect, super-tweet is represented as follows: C i = /150 where w i,j is the word vector for the jth word in super-tweet i and 150 is the number of timesteps that we have previously chosen. As with LSTM, we experiment with two different dimensions of the input: 25 and 50, both using the RBF kernel. For SVM we find that word representations of dimension 50 yield better performance. Nonetheless, LSTM outperforms SVM in all specifications. We report the details in Table 4. --- Picture-based Classification Given the large number of posted pictures in our dataset, we are able to finetune the entire VGG network rather than only the last few fully connected layers. We use 200,000 examples for training , 10,000 samples for validation and another 10,000 samples for testing. The highest accuracy that we obtain is 59.4%. In absolute terms, this accuracy is low and it reminds of the findings in picture clusters: there are a few clusters where Trump followers and Clinton followers weigh differently, but these are only minor clusters. For the dominant two clusters, text and people indoor, there is not statistical difference. In relative terms, however, this result is surprisingly high, as it confirms that it is feasible to predict individuals' Twitter following behavior by directly looking at their posted pictures. Besides finetuning the entire architecture, we also experiment with extracting deep features using the VGG network and then feed these features into an RBF kernel SVM, reminiscent of the classical R-CNN architecture [8,20]. This approach is particularly helpful when the number of training samples is small [24]. With this approach, we are able to achieve an accuracy of 57.0%, which is slightly lower than finetuning the whole architecture. --- Profile Image -based Classification Next, we examine the feasibility of predicting Twitter following inclinations using profile images. We have 3,096 profile images from Trump followers and 2,956 profile im-ages of Clinton followers. For each class, we take 500 samples out for validation and another 500 samples for testing. As explained in the last subsection, we use the VGG network to extract deep features instead of finetuning it. Considering that the deep feature is of dimension 1,000, we further apply a maxpool operation of dimension 10 with stride 10 to the deep feature to obtain a final feature of length 100. We train an SVM using these features and the accuracy is 55.8% . --- Tweet & Picture -based Classification Lastly, we develop an integrated approach that leverages both tweets and posted pictures. The model is illustrated in Figure 6. On the left is the LSTM model that processes the super-tweets, and on the right is the VGG model that processes pictures and generates deep features. At the bottom lies the softmax function that incorporates both text features and visual features: softmax where W text and W visual represent two weight matrices that are to be learned from the data. As with LSTM, we experiment with different configurations on the dimension of the word embedding, the dimension of the hidden state and the final output feature vector. The highest accuracy achieved by this fusion model is 68.9%, when the word vectors are of length 25, the hidden state is of dimension 100, and the mean output is used as the final output feature . It should also be noted that across all specifications, the fusion model uniformly yields the best result. Individual attributes such as age, gender, sentiment and even income, can be estimated using either texts [2,39,26] or images [17,42]. Both data sources certainly contain informative cues about these attributes. Our study suggests that these two approaches are at least capturing some shared hidden information, as the net gain of fusion model is less than than sum of the LSTM model and the VGG model. Whiles texts and pictures both contribute to a better understanding of an individual's following inclinations, our experiments suggest that 4.4 million tweets contain more information than 220,000 pictures with regard to understanding Twitter following inclinations. Moreover, the best model is the one that uses both texts and pictures. In terms of time complexity, the fusion model also outperforms finetuning VGG. For the fusion model, where deep visual features are extracted only once, training 20,000 samples for one epoch takes only about 9.3 minutes, compared with 2.8 hours for fine-tuning the VGG network for one epoch. Polarization has been developing for decades, and now we have shown that the phenomenon has started to manifest itself in social media as well. A natural next step is measure and track the evolution of polarization in social media each year parallel with survey-based research. To facilitate this initiative, we have made our data and code available4 . --- Conclusion Inspired by the gaping polarization in our society and the increasing popularity of social media, we took a first step in measuring political polarization on Twitter. By assembling a large dataset and applying state-of-the-art algorithms, we achieved a high accuracy of 69% in predicting candidate followers. Methodologically, we demonstrated incorporating both text features and visual features could improve the model performance. Substantively, we provided first evidence that the gaping polarization observed in our society has crept into social media as well. --- Acknowledge We acknowledge support from the Department of Political Science at the University of Rochester, from the New York State through the Goergen Institute for Data Science, and from our corporate sponsors. We also thank the four anonymous reviewers for their insightful comments and suggestions.
Polarization in American politics has been extensively documented and analyzed for decades, and the phenomenon became all the more apparent during the 2016 presidential election, where Trump and Clinton depicted two radically different pictures of America. Inspired by this gaping polarization and the extensive utilization of Twitter during the 2016 presidential campaign, in this paper we take the first step in measuring polarization in social media and we attempt to predict individuals' Twitter following behavior through analyzing ones' everyday tweets, profile images and posted pictures. As such, we treat polarization as a classification problem and study to what extent Trump followers and Clinton followers on Twitter can be distinguished, which in turn serves as a metric of polarization in general. We apply LSTM to processing tweet features and we extract visual features using the VGG neural network. Integrating these two sets of features boosts the overall performance. We are able to achieve an accuracy of 69%, suggesting that the high degree of polarization recorded in the literature has started to manifest itself in social media as well.
Introduction The COVID-19 vaccination campaigns started worldwide in December 2020 and are the primary strategy to tackle the pandemic. Along with vulnerable population groups, such as the elderly and individuals with vulnerable health, healthcare workers were prioritised to be vaccinated [1,2]. One reason was the heightened occupational risk that all HCWs are exposed to because they care for vulnerable population groups [3], who are more prone to COVID-19 infections. Consequently, HCWs are at a greater risk of direct exposure to the virus. The other reasons to prioritise HCWs are to prevent them from infecting the patients they care for [4] and to keep HCWs fit to work where they are most needed as frontline workers [3]. When the first vaccines for COVID-19 were approved in December 2020, the strategy was to achieve group immunity [5], which would be achieved when 67% of the population was vaccinated [6]. More recent evidence [7] states that classic group immunity for COVID-19 is an impossible goal, due to new and upcoming virus variants [8], asymptomatic transmission and because immunity is no longer guaranteed after infection or vaccination [9]. Thus, the best way forward is to achieve the highest vaccination degree possible instead of aiming at a threshold value. Since vaccine uptake is generally voluntary, vaccine willingness plays a vital role in a successful vaccination campaign [10]. The vaccine intentions of individuals are often influenced by attitudes, beliefs and opinions on vaccination [11], and are expressed in either vaccine willingness or vaccine hesitancy. Therefore, it is essential to investigate the reasons and arguments for vaccine uptake or refusal. Several studies have investigated the factors influencing vaccine willingness and vaccine hesitancy, such as the beliefs and attitudes towards vaccination. A global survey in 19 countries measured potential vaccine acceptance in the general population [12] and found rates of 88.62% in China, compared to 54.85% in Russia. The extensive systematic review on vaccine willingness by Sallam [13] reported on a total of 60 surveys taken from 31 published papers, including the survey of Lazarus and colleagues [12], but did not describe the attitudes associated with vaccine willingness or hesitancy. The included papers were carried out globally in the general population and different target population groups, such as HCWs, students and parents. The surveys analysing the general population found the highest vaccine willingness rates in Ecuador and the lowest in Kuwait . The surveys analysing HCWs found the highest vaccine willingness in Israel and the lowest in the Democratic Republic of the Congo . Hence, a review study examining the arguments for vaccine willingness and hesitancy of HCWs can provide important information for policymakers to reach the highest vaccination degree possible among HCWs. --- HCWs in the Field of Intellectual Disability HCWs who care for people with intellectual disabilities face a heightened risk due to the group they attend and the conditions in which this group lives. The people with ID are vulnerable as they often have multiple additional medical comorbidities [14]. Furthermore, people with ID have a higher chance of infection [15], as they often stay in assisted-living facilities throughout their lives, where they, depending on the severity of their disability, are cared for by a large number of HCWs. The higher the number of individuals with whom the patients are in contact, the higher the risk for infection. Indeed, several studies have reported excess mortality rates during the pandemic among people with ID [16][17][18]. In the Netherlands, for example, the Academic Collaborative 'Sterker op eigen Benen' found that, while 1.1% of the general population who contracted a COVID-19 infection have died, the mortality figure of 4.6% for people with ID was far higher [19]. Thus, the HCWs who care for people with ID could face a higher risk of contracting COVID-19 than other HCWs. Therefore, it is crucial to investigate the reasons and arguments for vaccine uptake or refusal of the HCWs caring for people with ID, given their heightened risk. --- The Current Paper To date, however, very few studies have explored the vaccine willingness and hesitancy of HCWs in general and, more specifically, of the HCWs employed in the care for people with ID and their attitudes towards COVID-19 vaccination. This review aims to better understand vaccine willingness and hesitancy among HCWs in general, and those who care for people with ID, by identifying key themes in the available research. The research question is: What factors are associated with vaccination hesitancy and willingness in HCWs? The current study assesses this question by conducting a scoping review: to synthesize the available topics and identify gaps in the research field [20]. Thus, all of the themes related to vaccine willingness and hesitancy were gathered from the reviewed articles. --- Materials and Methods --- Design and Protocol This scoping review aims to identify the key themes in the literature concerning vaccination hesitancy and willingness among HCWs. In order to attain high-quality reporting, the Preferred Reporting Items for Systemic reviews and Meta-Analyses extension for Scoping Reviews Checklist was used in this review [21]. The 12-step guideline by Kable et al. [22] was used during the search strategy. --- Eligibility Criteria The papers that focused on COVID-19 vaccination willingness and hesitancy amongst HCWs were included. Initially, the search focused on those HCWs who cared for people with ID, but very few papers met this criterium. Therefore, the scope was broadened to include HCWs in general. The pre-printed and published, qualitative, quantitative and commentary papers were included. Because this is a scoping review, the papers that were not original research were also included, such as a systematic review and a commentary. There was no language exclusion. There was no eligibility criterium for the year of publication or data collection timeframe, but only the papers dating from 2020 and 2021 were available due to the search topic. The papers that did not focus on vaccination hesitancy or willingness amongst HCWs and their corresponding attitudes, beliefs, perceptions or views were excluded. --- Information Sources, Search Strategy and Selection Process The second author conducted the search on 4 April 2021, in the databases CINAHL, APA PsycArticles and APA PsycInfo , Web of Science, Semantic Scholar, Prospero, Outbreak Science, Cochrane and Scopus. The search terms were variants of the keywords COVID-19, vaccination intentions, healthcare workers and intellectual disability, combined with Boolean search operators. A complete description can be found in the Supplementary Materials. This resulted in the identification of articles related to HCW perceptions. Figure 1 displays all of the steps conducted to reach a total of 26 articles. --- Data Synthesis and Analysis Microsoft Excel was used for the following steps. First, the purpose of each of the studies was extracted from the introduction texts. If present, the hypotheses were also extracted. Second, the methodology of each of the studies was extracted, including the type of research and the survey topics . Third, the samples of the studies were described: sample sizes, type of participants/respondents , group sizes and descriptors of participants . Fourth, the countries and time frame of the data collection were extracted. The time frame of the data collection is essential in this case, because vaccination willingness/hesitancy may change throughout the pandemic. Finally, the studies' results and conclusions were gathered and organised into themes and sub-themes. These themes are Percentages of vaccine willingness; Predictors of vaccine willingness differentiated by 11 sub-themes; Attitudes of vaccine willingness and hesitancy differentiated by 19 sub-themes; and Sources of vaccination information. Two more themes that will be discussed directly in the discussion section , of this review are Contextual factors and changes in COVID-19 vaccine acceptance over time; and Future strategies for interventions. The difference between themes two and three is that theme two entails the socio-demographical characteristics of the respondents: attributes that are descriptors, while theme three entails the thoughts, beliefs, or opinions of the respondents: attributes that are susceptible to change. After the second author searched, the first author independently reviewed all of the 27 papers in the final selection for eligibility by making a full-text screening. The paper by Nioi and colleagues [23] was omitted from the final selection after consultation with all of the authors, resulting in 26 papers. Although this paper [23] does cover future challenges in the vaccination campaign specifically toward HCWs, it does not cover vaccine hesitancy or willingness amongst HCWs and their attitudes on the subject. Because Sallam [13] is a systematic review, their results will be compared to those of the current review in the discussion section , of this paper. The commentary by Gur-Arie et al. [24] discusses vaccine hesitancy among HCWs and the ethical issues of mandatory COVID-19 vaccination and will also be reviewed in the discussion section . Next, all of the themes extracted from the papers by the second author were reviewed by the first author. All of the authors came to a consensus about the themes identified. There was one alteration of a category: Contextual factors now also includes Changes in COVID-19 vaccine acceptance over time. Two of the attitudes were merged, and one theme was rearranged to make a more concise overview of themes. --- Data Synthesis and Analysis Microsoft Excel was used for the following steps. First, the purpose of each of the studies was extracted from the introduction texts. If present, the hypotheses were also --- Characteristics of the Literature The characteristics of the papers included in this review are presented in Table 1. In the running text of Sections 2 and 3, the referencing numbers of the reviewed papers are marked in superscript and correspond with the paper numbers 1-26 in all of the tables. The screening for the papers on the topic of COVID-19 vaccination willingness and hesitancy amongst HCWs yielded 26 articles that mainly consisted of cross-sectional surveys . The remaining four papers were two cross-sectional qualitative reports 1,14 , a commentary 7 and a systematic review 21 . The data contained in the included papers were gathered in 16 different countries worldwide, spread out over the continents of Africa, Asia, Europe, North America or a combination of two continents. The time frame for the data collection of these papers was between February 2020 and March 2021. The sample sizes ranged from 24 respondents in a cross-sectional qualitative report 14 to 16,158 respondents in a crosssectional survey 15 . In 12 papers 2,3,4,5,9,11,17,18,19,22,24,26 the group of HCWs was differentiated by health professions within the health care system, as seen in the Respondents column. Their corresponding vaccine willingness is also shown in Table 1. --- Results --- The Difference in Vaccine Willingness across Samples A total of 21 papers reported percentages representing vaccine willingness amongst HCWs. These percentages differed drastically across the papers, ranging from only 27.7% in one paper 9 to 92% in another 18 . Vaccine willingness among HCWs is lowest in the Democratic Republic of the Congo 9 , Africa, followed by three countries in the Middle East: Egypt 16 , Saudi Arabia 20 and Turkey 26 . Only one paper reported on the vaccine willingness of an Asian country: China 12 . The vaccine willingness of HCWs in North America fluctuated the most, with vaccine willingness ranging from 36% 22 to 92% 18 , both in the USA. In Europe, vaccine willingness amongst HCWs ranged from 56% 6 in France to 82.95% 23 in Poland. The 13 papers that differentiated vaccine willingness across various health professions will be further explained in the following section Predictors of Vaccine Willingness. Only two papers 8,13 reported about HCWs employed in the care of people with ID. In both of the papers, HCWs showed a comparable percentage of vaccination intention; 76% and 82%. These papers collected data between January and February 2021, when vaccination was not mandated in the USA and Canada. Iadarola and colleagues [30] focused not only on the HCWs who care for people with ID but also individuals diagnosed with ID and family members of people with ID . The vaccine intentions did not significantly vary across these three groups. Not all of the papers reported exclusively on the vaccine willingness of HCWs but also included the willingness of other populations 3,4,8,21,24,26 . Of the papers that reported about HCWs compared to the general population, some mentioned significantly higher vaccination willingness percentages for HCWs than the general population 23,26 . In contrast, others found no statistically significant difference between these groups 4,8 , and one found that doctors and the general population were more willing to get vaccinated than nurses 3 . In an additional paper 23 , the vaccination willingness of medical students was compared to that of non-medical students, with significantly higher percentages for the medical students. --- Predictors of Vaccine Willingness The theme Predictors of Vaccine Willingness was split into 13 sub-themes, presented in Table 2. Not all of the sub-themes are statistically significant predictors in each paper. Profession, age, past vaccine behaviour and gender are statistically significant predictors in at least eight papers. The sub-themes that were significant predictors in less than five papers were comorbidities, education, ethnicity, mental well-being, COVID self-history, geographical location, COVID family history, income and political orientation. The type of profession was questioned in 18 papers and significantly predicted vaccine willingness in 12 papers 2,3,4, 5,9,11,17,18,19,22,24,26 . Physicians or medical doctors had higher vaccine willingness than other HCW staff in 11 of those papers. Szmyd and colleagues [45] reported vaccine willingness as high as 94.44% among physicians , whereas only 61.48% of administrative healthcare assistants were willing to get vaccinated. One paper 11 differed from the rest of the results: physicians were associated with lower vaccine willingness than nurses, other HCWs and students, as shown in Table 1. Age also significantly predicted vaccine willingness. Age was questioned in 21 papers, and was a statistically significant predictor in ten papers 2,8,9,11,12,13,16,18,22,26 . Older age predicted a higher vaccine willingness in most papers 8,9,13,16,22,26 , but not all of them. Three papers 2,11,12 reported a younger age as predicting vaccine willingness. Finally, vaccination intention was highest in the age groups under 40 and over 60 in one paper 18 . • * • * • * • * • • • * • • * • • • • * • * • * • * • * • * 12 18 Age • * • • • • • * • * • • * • * • * • * • • * • • • * • • • • * 10 21 Past vaccine behaviour • * • * • * • * • • • • * • * • * • * • * • * 10 13 Gender • • * • • * • • • * • • * • • • • • * • • * • * • • • • * 8 21 Comorbidities • • * • * • • • • * • • • 3 10 Education • * • • • • * • • 2 7 Ethnicity • • • • • • * • * 2 7 Mental well-being • * • * • 2 3 COVID self-history • • • • • * 1 5 Geographical • • • • • • * 1 6 COVID family history • * 1 1 Income • • • * • 1 4 Political orientation • * 1 1 • item was asked/questioned. * Relation to vaccine willingness is statistically significant. Both past vaccine behaviour and gender predicted vaccine willingness frequently and consistently. A total of 10 papers 2,3,5,11,18,20,22,23,24,25 out of 13 reported that past influenza vaccine behaviour predicted vaccine willingness significantly; receiving the influenza vaccine corresponded with higher vaccine intentions. A total of eight papers 3,5,9,11,18,20,22,26 out of 21 reported that gender predicted vaccine willingness; being male corresponded with higher vaccine intentions. --- Attitudes on Vaccine Willingness and Hesitancy Eighteen different sub-themes focusing on the attitudes related to vaccine willingness and hesitancy were extracted from the 26 selected papers. As shown in Table 3, all of the attitudes corresponded either with vaccine willingness or hesitancy and were categorised into five overarching themes: Health factors; Ethics; Trust-related issues; Information and Practical factors. Where possible, the information about significance was added. However, most of the papers only reported significant relations between attitudes and vaccine willingness. The attitudes corresponding to vaccine hesitancy were primarily ranked in order of frequency. Therefore, the attitudes mentioned most frequently concerning vaccine hesitancy were also marked. The attitudes or beliefs that consistently corresponded with vaccine willingness fall under the themes of Health factors and Ethics. The most frequently occurring attitude in favour of vaccine willingness was the perceived COVID-19 threat: fifteen different papers reported that an increased perception of COVID-19 threat was associated with higher vaccine willingness. Six papers reported that attitudes toward protecting family members, vaccination being part of the job and collective responsibility were associated with vaccine willingness. Finally, the belief that vaccination should be mandatory was measured and linked to vaccine willingness in three papers. Here, HCWs were more willing to get vaccinated than other groups of participants and thought more often that vaccination should be mandatory. The attitudes or beliefs that consistently correspond with vaccine hesitancy can also be seen in Table 3. Eight of the 13 attitudes that corresponded with hesitancy fall under the theme of Trust-related issues, one under the theme Information and four under the theme Practical factors. The attitude associated with hesitancy most often was fear of short or longterm side effects; this was the case in 17 papers. The additional concerns reported in ten or more papers that fall under the category Trust-related issues were the vaccine's safety, efficacy, and speed of development. Distrust was observed in several forms: distrust of the vaccine itself; distrust of the government; distrust of the pharmaceutical companies or distrust of health authorities/officials. Another attitude associated with vaccine hesitancy was the lack of information or misinformation; this was the case in nine papers. Examples of where information was lacking were: the vaccine in general 14 ; the benefits of vaccination 26 ; vaccine development 2,18 ; the financial interest of pharmaceutical companies 11 and vaccine side effects 11 . The spread of misinformation across traditional and social media was established in two qualitative papers 1,14 and four quantitative papers 9, 16,24,26 . Finally, four attitudes that corresponded with vaccine hesitancy fall under the theme of Practical factors. The attitude of favouring alternative treatments over vaccination was linked to hesitancy in three papers. The impact on other precautions, logistics to get vaccinated and spirituality/religion were all linked to hesitancy once. • • • * • * • * • • • * • * • * • * • * • • 14 Ethics Protect family members • * • * • * • * 4 Mandatory vaccination • * • * • 3 Collective responsibility • * 1 Vaccination is part of the job • * 1 --- Attitudes on Hesitancy Trust-related issues Side effects • • 1 • • • • 1 • 1 • • * • • • • 1 • • * • * • 17 Safety • • • • • • * • • 1 • • * • • • * • 14 Efficacy • • • • 1 • 1 • * • • • • • • • 1 13 Speed of development • • 1 • • • * • • • • • • 1 • * 12 Distrust • • • • • • • • • * •10 Anti-vax and conspiracy • • • • • • • • 8 Distrust because minority/ethnicity • • * • • • 5 Fertility • • • 3 Information Lack of information/misinformation • • • • • • • • • 9 Practical factors Alternative treatments • • • 3 Impact on other precautions • 1 Logistics to get vaccinated • 1 Spirituality/religion • 1 • item was asked/questioned. * Relation to vaccine willingness or hesitancy is statistically significant. 1 Attitude is mentioned most often in relation to vaccine hesitancy. --- Information Sources of COVID-19 and Vaccination In some of the papers, vaccination distrust and vaccine hesitancy were linked to the sources used by the respondents for the COVID-19 vaccination information. For instance, Di Gennaro and colleagues [26] reported that using Facebook as a primary source of information on the COVID-19 vaccination was a statistically significant predictor of higher vaccine hesitancy. In the paper by Mohamed Hussein and colleagues [38], the prime sources of information for respondents were social media and television , and according to the authors, this was a reason for the low percentage of vaccine willingness in their sample, which was 45.9%. Additionally, a positive relation between the vaccine hesitancy and distrusting the Ministry of Health was found by Verger and colleagues [46]. They reasoned that this distrust was a major problem since the Ministry of Health was the primary information source on COVID-19 vaccination, for both HCWs and the general population. Other sources of information on COVID-19 than Facebook or social media were linked to vaccine willingness. Attending lectures/discussions about COVID-19 and using official websites were, amongst other variables, significantly associated with COVID-19 vaccine acceptance in the paper by Kabamba and colleagues [31]. Similarly, Yurttas and colleagues [47] describe that, although social media and television were the most common information sources in both the general population and HCWs, the HCWs also frequently consulted institutional declarations and medical literature, which might have caused their higher vaccine acceptance. --- Discussion This scoping review aimed to examine the key themes in the available research on COVID-19 vaccine willingness and hesitancy in HCWs, including those who care for people with ID, with a specific interest in their arguments, beliefs and attitudes on vaccination. A total of 26 papers were selected and analysed, focusing on the socio-demographical predictors of vaccine willingness and the attitudes that inspire vaccine hesitancy in HCWs. Only two papers focussed on HCWs working with individuals with ID [30,35]. The vaccine willingness percentages were comparable between the respondents of these two papers and within the subgroups of these papers. As a result of the limited literature available on the HCWs that work with people with ID, the scope of this review was broadened to all HCWs. Therefore, in the following steps, the analyses included HCWs of any kind. First, the predictors of vaccine willingness in all of the 26 papers were analysed. This analysis revealed that profession, age, gender and past vaccine behaviour were the most powerful predictors of the willingness to be vaccinated: medical doctors; people of older age; men; and those previously vaccinated with the influenza vaccine were most likely to receive the COVID-vaccine. Our findings suggest that nursing staff, people of younger age, women and those not previously vaccinated are the target populations when aiming to inform HCWs of the benefits of vaccination. The results of this review partly support those found in the rapid systematic review by Robinson et al. [48]: people of younger age and women were more hesitant towards vaccination in the general population. Additionally, Robinson and colleagues [48] reported higher vaccination hesitancy in people with a lower income, people with lower education and people belonging to an ethnic minority group. These last three respondent groups were statistically significant predictors in only one or two papers in this review. Next, all of the COVID vaccine attitudes were categorized: first in theme; secondly according to whether they contributed to either vaccine willingness or vaccine hesitancy. The attitudes promoting vaccine willingness fit within the themes of Health factors and Ethics. Some of the examples are the COVID-19 threat to oneself or the desire to protect family members or other persons. The attitudes promoting vaccine hesitancy fit within the Trust-related issues and Information themes. The examples of trust-related issues are concerns about both the short-and long-term side effects of the vaccine, the vaccine's safety, efficacy and the speed of the vaccine development. Other examples are lack of information or misinformation on the vaccine. This suggests that the themes that need to be covered when providing interventions to inform HCWs about vaccination are Trustrelated issues and Information. The findings of this review complement those of earlier studies. Robertson et al. [49] reported, in the UK Household Longitudinal Study with over 12,000 participants, that the main reason for vaccine willingness is reducing the risk of being infected by COVID-19 or getting ill from it , while the main impediment to vaccination is worrying about the unknown future effects of the COVID-19 vaccine . Interestingly, this paper also reported responses about persuasion. The factors that would increase the likelihood of getting vaccinated, according to the participants, were knowing a vaccine reduced their risk of COVID-19 infection , knowing a vaccine reduced the risk of being seriously ill and knowing the vaccine was proven to be safe . In other words, the respondents expressed the need for more information on the vaccines' safety and efficacy. In the two papers that describe vaccine hesitancy in HCWs that care for people with ID [30,35], the main socio-demographical predictor of willingness was age, with younger people being more hesitant for vaccination. The other socio-demographical characteristics, such as profession, gender, ethnicity, education and geographical location, were not statistically significant predictors of vaccine willingness. In Iadarola et al. [30], there was, however, an interaction effect between age and ethnicity. In both Black and White respondents, those over the age of 50 were less vaccine-hesitant than their younger counterparts. This age difference was less great in the Asian and Latin/Hispanic respondents. The respondents who were hesitant to get vaccinated in the study of Iadarola et al. [21] were most concerned by the vaccine's possible side effects and its fast development. Not wanting to be an experiment and not trusting the government were the follow-up reasons for vaccine hesitancy, and these opinions were strongest among the Black respondents. The respondents that were hesitant to get vaccinated in the study of Lunsky et al. [35] believed more strongly than those willing to get vaccinated that 'a vaccine was unnecessary because of good health', but also distrusted the vaccine because of its fast development and potential side effects. Alternatively, these respondents believed less strongly than those willing to be vaccinated that they were at risk of getting COVID, that a vaccine would protect their family or clients, or that vaccination was a part of their job. Comparing the outcome measures of these two papers reveals the similarities between the respondents: age being the sole predictor of vaccine willingness, and concerns about the vaccines' side effects and their fast development inspiring vaccine hesitancy. Finally, the information sources used about the COVID-19 vaccination and their connection to vaccine willingness and hesitancy were analysed. What sources are used to inform oneself on COVID-19 vaccination can influence deciding whether to get vaccinated or not. It seems that some sources, such as Facebook and other forms of social media, are a breeding ground for misinformation and even conspiracy theories, which in turn could lead to vaccine hesitancy. Misinformation is often the basis on which distrust of the vaccine is formed. Berry and colleagues [25] explicitly state: "During town hall meetings with 196 frontline staff from the skilled nursing facility workforce, misinformation through social media was common: rapid vaccine development and infertility and pregnancyrelated concerns were among the most frequent raised." They even state that the concerns raised are more pervasive than some national polls might suggest. Thus, the spread of misinformation through social media platforms, in both the general population and HCWs, should be taken very seriously and counterbalanced by targeted interventions, such as information sessions on actual vaccine information and the spread of more informative videos on social media. Even though social media is the primary source of misinformation, this platform can also be used to make more accurate information, in easy-to-understand language, accessible to our target group and the general public. --- Contextual Factors and Changes in COVID-19 Vaccine Acceptance over Time It is important to note that vaccine intentions may not be stable over time. Some papers collected data on the opinions of HCWs before the distribution of vaccines worldwide in December 2020. Other papers started collecting data after the onset of the mass vaccination programme. The contextual factors could have affected the vaccine willingness of respondents. For example, O'Brien and colleagues [39] collected data from HCWs in the USA using a brief survey sent out in October 2020 and again in December 2020 . The vaccine willingness of respondents increased by more than 20% between these two measurements. This increase is partly due to the 998 participants that contributed to both of the measurements and changed their vaccine intention between these two time points: 2.9% changed from willing to hesitant, and 13% from hesitant to willing. Two events may have affected the respondents' vaccine willingness during these months. The first event was the US presidential election on 3 November 2020 [50,51]. The second event was the release of the phase III clinical trial results by two vaccine manufacturers, after which both of the vaccines were approved for Emergency Use Authorization [52]. Similar results were found by Meyer and colleagues [37]: an increase in the daily-recorded cases of vaccine willingness was reported after the EUA release. Besides the rise of vaccination intentions over time, it is also possible that these intentions could decline. In Qattan et al. [42], the low rates were explained by a decline in daily recorded COVID-19 infections, resulting in alleviated worries. Similarly, Kwok and colleagues [34] speculated that their participants' relatively low vaccination intentions were "in part explained by the successful crisis response on the COVID-19 epidemic in Hong Kong". In other words, there might be a lower feeling of urgency for vaccination among these HCWs, if the alternative measures combatted the pandemic well. These results suggest that examining the population's vaccine willingness and hesitancy is ongoing, at least as long as the COVID-19 pandemic has not ended. In addition, when running vaccine information campaigns, contextual factors should be considered-e.g., new virus variants, research related to this virus and 'booster' vaccine campaigns. --- Future Strategies for Interventions Two papers included in this review explicitly described interventions that were held to inform HCWs about COVID-19 vaccination. First, online town hall meetings were organized by Berry and colleagues [25], where moderators and doctors met with the skilled nursing facility workforce to discuss COVID-19 vaccination. The qualitative report sheds light on the concerns and questions of 193 HCWs on vaccination and presents examples of the suggested answers by the moderators and doctors. What is interesting about their approach is that these answers were personal stories and experiences whenever possible, instead of data-focused answers. Berry and colleagues [25] conclude that "sharing positive emotions and stories may be more effective than sharing data when attempting to reduce vaccine hesitancy in SNF staff". It may well be possible that these stories are more relatable than statistics. This should also be taken into account in future campaigns. Interventions should provide information so that the target group can relate to it and make the idea of getting a vaccine less clinical. Second, Gakuba and colleagues [29] investigated the impact of a vaccine information session on the willingness to get vaccinated among HCWs. A 45-min information session on the COVID-19 vaccine and vaccine hesitancy, followed by a question-and-answer session, was delivered by intensivists to 61 non-medical HCWs. The participants were questioned about their vaccine willingness before and after the information session: the acceptance rates increased drastically from 56% to 82%. Both of the papers address the importance of appropriate interventions that inform HCWs and facilitate exchange with HCWs to improve their vaccination intent. Another way of improving the vaccination rates among HCWs worldwide could be to make vaccination mandatory, either for all adults or just HCWs, as is already the case in some countries [53]. Only one paper advocated for mandatory vaccination and based this solely on the low vaccination intentions of certain respondents, but not on ethical argumentation [41]. The question arises if mandatory vaccination will solve the problem of low vaccination or if this would not merely increase distrust in vaccine-hesitant HCWs. Instead, Gur-Arie and colleagues [24] argued for improving trust between HCWs, health institutions and governments in order to promote voluntary vaccination. To force individuals to vaccinate for COVID-19 when their reasons not to vaccinate are due to safety concerns of the vaccine itself could have the opposite effect and may even lead to essential staff quitting their jobs. Therefore, addressing the concerns raised would be a more suitable way to build trust. One paper investigated which initiatives would increase vaccination intentions for COVID-19 among their HCW respondents [26]. These were: "increasing information quality about the vaccine ", "increasing information quality about vaccine development ", "implementing an economic incentive ", and "making vaccination mandatory ". Clearly, mandatory vaccination was the least-appealing option. Several papers analysed in this review have mentioned increasing information quality about the vaccine and its development [28,30,34,35,38,42,47]. Information quality can be increased through lectures, information sessions, focus groups or online interactive meetings. Increasing information quality can also be accomplished by spreading more informative videos on social media, where the most misinformation is spread and where the vaccine-hesitant individuals get information [28,34,38,47]. It seems that mandatory vaccination would not be ethically justifiable until all of the other means have been tried and failed. --- Strengths and Limitations The strengths of this paper include a large number of HCWs in the selected papers. The number of participants was 49,775 in all of the papers, of which 43,199 were HCWs, spread out over 16 different countries worldwide. An additional strength was the inclusion of both quantitative and qualitative papers. This resulted in both statistically comparable figures and more in-depth insights into the attitudes toward vaccination hesitancy worldwide. A limitation of this scoping review is the small number of papers on the attitudes of vaccine hesitancy of HCWs caring for people with ID. An alternative would have been to broaden the search to long-term care for the elderly in addition to people with ID, as HCWs in these facilities generally share characteristics in terms of the type and level of education, organization of care and focus on the quality of life. More research focussing on HCW in the field of ID are recommended. The vaccine acceptance rates of HCWs in South America and Australia were missing in this scoping review. Additionally, a limitation of this review is that very few surveys were found with vaccine acceptance rates of HCWs from the African and Asian continents. In the systematic review by Sallam [13], these four continents were also under-represented. More research is necessary to investigate the vaccine intentions of HCWs across the globe to attain more insights into cultural differences, mainly in continents such as Africa, Asia, Australia and South America. In the results section , of this review, we confined ourselves to describing the socio-demographical predictors of vaccine willingness that were statistically significant in at least five papers. Thus, the predictors that were not described are: comorbidities; education; ethnicity; mental well-being; COVID self-history; geographical location; COVID family history; income and political orientation. Although these predictors were not very often significant, some of these were not questioned in the selected papers. These predictors might be statistically significant more often if they were investigated thoroughly. In order to examine the predictors of vaccine willingness, future research should include all of the possible parameters, such as mental well-being, COVID-19 family history and political orientation, as these were statistically significant most often in relative terms. Furthermore, it was challenging to compare HCWs to the general population as this was not possible to retrieve from the papers. Related to this, for the predictors, it could be counted how often each factor was statistically significant. For the attitudes, this was not always the case. Most of the papers merely calculated the frequency of occurrence of the attitudes related to vaccine hesitancy. Finally, this paper reviews the papers that were found in April 2021. Given the variable nature of vaccine intentions, the development of different COVID-19 variants and the worldwide 'booster' vaccination programmes, new research should be executed quickly and continuously. --- Conclusions In summary, it appears that vaccine hesitancy varies drastically among HCWs worldwide, is driven by trust-related issues and is affected by the contextual factors. In order to reach the highest degree of vaccination, it is vital to address the problem of COVID-19 vaccine hesitancy more effectively, in the form of interactive interventions concerning the trust-related issues of the vaccination programs, that address HCWs' concerns and questions by providing personal stories and experiences. Furthermore, reliable and accurate information about the COVID-19 vaccination should be spread across social media platforms to target hard-to-reach population groups and to decrease misinformation. Additional research is needed to specify more precisely the attitudes concerning the vaccination intentions of HCWs globally and of the HCWs caring for people with ID. --- Data Availability Statement: Not applicable. --- Supplementary Materials: The following supporting information can be downloaded at: https:// www.mdpi.com/article/10.3390/ijerph191610192/s1, Table S1: Search terms. Author Contributions: Conceptualization, V.D. and P.S.S.; methodology, V.D.; validation, L.D.W. and V.D.; formal analysis, L.D.W. and V.D.; writing-original draft preparation, L.D.W.; writing-review and editing, V.D. and P.S.S.; visualization, L.D.W.; supervision, P.S.S.; project administration, P.S.S.; funding acquisition, P.S.S. All authors have read and agreed to the published version of the manuscript. Funding: This review was conducted as part of a larger project called Vaccinatie-bereidwilligheid onder medewerkers in de gehandicaptenzorg in The Netherlands for which This project was funded by ZonMW . P.S.S. was funded by the Bartiméus Fund . Institutional Review Board Statement: Ethical Approval was granted by the VCWE of the Vrije Universiteit Amsterdam . Informed Consent Statement: Not applicable. ---
A worldwide vaccination programme is the chosen strategy against the COVID-19 pandemic. Vaccine hesitancy, however, forms a threat to achieving a high degree of vaccination. Healthcare workers (HCWs) are exposed to greater risks, in addition to HCWs who care for people with intellectual disabilities (ID). However, little is still known about these groups' vaccine hesitancy. This review aims to provide insight into the intentions and attitudes of HCWs on COVID-19 vaccination, including those who care for people with ID. The search included both types and was conducted in nine databases. A total of 26 papers were identified concerning the vaccine intentions of 43,199 HCWs worldwide. The data were gathered both quantitively and qualitatively. The papers were analysed for all of the themes regarding vaccine intentions, which were: (1) percentages of vaccine willingness; (2) predictors of willingness; (3) attitudes of willingness and hesitancy; (4) sources of vaccination information; (5) contextual factors and changes in COVID-19 vaccine acceptance over time; and (6) future strategies for interventions. Concerns about vaccine safety, efficacy and shortand long-term side effects were the most prominent in HCWs and, therefore, should be addressed in future intervention strategies. Furthermore, interactive interventions are recommended to facilitate exchange, and accurate information should be accessible to target groups on social media platforms.
Научене лекције из примењених партиципативних пракси у музејима и инклузија људи из рањивих друштвених група Ауторка у овом чланку промишља савремене музеолошке и културноантро полошке парадигме фокусиране на партиципацију и сарадњу, а ради инклу зије људи из рањивих друштвених група у музејски рад. Чланак показује како промена парадигме усмерене ка учешћу или сарадњи мења епистемолош ку вредност искуственог знања у вези са културним наслеђем и начинима на који музеј функционише. На крају, ауторка показује како су три експери менталне партиципативне, сарадничке праксе у националним музејимапроменом перспективе о улози људи од пасивних посетилаца до активних сарадника -такође промениле перспективу о њиховој рањивости и пред ставиле вредан алат за бољу друштвену инклузију. Путем партиципативних приступа, музеји могу добити већи друштвени значај у савременом друштву. Кључне речи: музеј, партиципација, инклузија, људи из осетљивих група, културно наслеђе --- FROM THE PERSONAL INTRODUCTION TO PERSPECTIVES ON PARTICIPATION AND INCLUSION IN MUSEUMS Each academic article or research has its personal story, so I present my own. I was born with a disability. Even though disability is not my only identity and never limits my daily activities, it has shaped and in fluenced my interests in what I am doing in the ethnology and cultural anthropology field, especially museology and museum practice. For ex ample, between 2013 and 2015, I was employed on a European project titled "Accessibility of cultural heritage to vulnerable groups", 1 which influenced my understanding of museums as creative inspiration for social inclusion of different social groups through the accessibility of 1 The European Social Fund and the Ministry of Culture of the Republic of Slovenia founded the project. Slovene Ethnographic Museum led and implemented it in five national museums and a gallery. By the end of the project, we published a publication of best practices implemented during the project . cultural heritage. 2 At the same time, I was engaged in an interdiscipli nary, international project, "Eurovision: Museums Exhibiting Europe "3 , where I contributed some points on the accessibility of mu seums to vulnerable social groups and to the toolkit titled "Integrating multicultural Europe: Museums as Social Arenas on the accessibility of museum to vulnerable groups" . I proposed that acces sibility in museums could be reached through performative and partic ipatory practices, giving people an engaging social experience. Through these practices, the museum can build a responsible and sustainable bond with its social environment. The collaboration within project EMEE enriched me with theoretical backgrounds and concepts such as Richard Handler's museum as "a social arena" , James Cliffordʼs museum as "a contact zone" , and later Jocelyn Dodd, Ceri Jones and Richar Sandellʼs concept of a museum as "a trading zone" . 4 All these concepts perceive museums as public spaces where meaning is negotiated, contested and created by different social groups. Cultural heritage in the form of a collection or edited in an exhibition is created through a selection of material in a curatori al process and thus never out of ideology and hierarchically structured knowledge and relations of social/political power . I experienced how a political/social power can be challenged through a research project within the National Muse um of Contemporary Art of Romania in Bucharest. 5 I worked par allelly on research -a participatory, socialoutreach project to reach the гласник етнографског института сану LXXI | 184 | nearest local population of the museum. The museum is in the parliamen tary palace 6 , one of Bucharestʼs largest administrative and most protected buildings. The museumʼs establishment in the build ing, which carries such a heavy historical symbolism related to controver sial memories and emotions, was disputed since the beginning. 7 However, the political decision to establish a national museum of contemporary art in the building has some sense: the collection of the museum was found ed in 2001 after the fusion of the "National Documentation and Art Ex hibition Office" and the "Contemporary Art Department of the National Museum of Art of Romania" . 8 Nevertheless, the burdens of the past are still vivid outside the muse um. They can be described as a mental barrier between the museum and the inhabitants of Bucharest, especially the nearest inhabitants of the quarter RahovaUranus. I decided to place 6 After the Bucharest earthquake in 1977, the authorities decided to rebuild the South part of the Dâmbovița river. Before the construction of the building started in 1984, a vast part of the city was demolished, and more than 40.000 people were allocated. The construction site, however, opened a working place to around 700 architects and 20.000 workers. From several people I contacted, I heard speculations that the project impoverished the country and provoked political turmoil -the revolution of 1989 that cost Nicolae Ceauşescu head in the end. After the revolution, the building remained unfinished and under debate: demolish it or use it for something else. Today the building hosts the Parliament, the Senat, the Chamber of Deputies and other representative political organisations, and from 2004 onwards, the National Museum of Contemporary Art of Romania. 7 To this problem was dedicated an international conference and exhibition, "Romanian Artists love Ceauşescu's Palace?!", curated by Ruxandra Balaci . 8 The department of MNAR was established in 1994 to cover the institutional lack of collection and valuation of Romaniaʼs contemporary visual art. ONDEA collection was created through an office for the organisation of exhibitions established in 1968, which was put under the "Council of Socialist Culture and Education" in 1971 and, in 1991, transformed into ONDEA. Only some works were donated to the museum by Romanian artists themselves. The director Călin Dan wrote that MNAC is an institutional heir of structural problems and dysfunctions of the previous period that owe many works belonging to specific cultural and political contexts . In the past, the collection policy was driven by "political directives or subjective inspirations", and the "absence of clear methodology" resulted in various "embarrassments" like "too few quality works, too . The image of contemporary art of Romania reflected in the museum collection is impartial and "amorphous", difficult to be interpreted without discriminative notions . Today the museum is one of the leading institutions of contemporary art in Romania, combining in its program the presentation of contemporary artworks with exhibitions that evaluate and critically present past artworks and practices. my research there in collaboration with the museum staff, who request ed to build a social bond between the museum and the nearest commu nity in RahovaUranus. The barrier is also physical as the museum and the quarter are divided by traffic street, as well as the wall surrounding the building with police controls, which adds to a heavy notion to already historically established perception of the palace as a symbol of social and political power and inaccessibility. The latter was a significant barrier to the participatory projects that I coorganised in MNAC in collaboration with artists and inhabitants of Rahova. Often people who experience social exclusion find a problem identifying with the larger community and with the images presented in the national museums and galleries. These images have a nation/statebuilding role, but at the same time, they are excluding, elitist and selective. Mateja Kos, the curator of the National History Museum of Slovenia, writes that the greatest challenge that national museums face today is the contemporary museological paradigms inclined towards in clusion and participation built on local communities . Peter van Mensch and Leontine Meijervan Mensch, in their book on new trends in museology, wrote that the shift in the museum practice at the beginning of the 21 st century happened when the principles of inclusion, access and participation moved from the "front stage" to the "backstage" . At the heart of the participatory paradigm is the cooperation between the museum and its audience, which are seen as "heritage communities"groups of people built across territories and social groups that "value spe cific aspects of cultural heritage which they wish, within the framework of public action, to sustain and transmit to future generations" . Marilena Alivizatou observes that collaborative, participatory practic es have been used in the preservation of intangible heritage since Peter Davis related ideas of safeguarding intangible heritage to the theory and practice of "ecomuseums" by the intersection of ecological and environ mental politics in the 1960ʼ and community museums in their connections with local people and their territory. "As Davis argues, ecomuseums are more to do with empowering local communities and preserving a sense of identity concerning local history and locality. They are spaces where the involvement and participation of local people are essential and that play an active role in preserving living culture in a holistic framework . For Davis, an important aspect of ecomuseums is their ability to izatou 2022, 6). Davis, among others, traced the birth of "ecomuseums" in the work of George Henri Rivière. However, Alivizatou writes that Rivière and ethnologists in the "Musée des Arts et Traditions Populaires" in Paris carried out field research and documen tation by talking with people in order to make records, collecting objects, preserving and interpreting their ways of life in exhibitions, recordings or publications, so to say the idea of the involvement of local communi ties was important primarily as a source of information . From my point of view, I do not see practices used by ethnographers that reduce the involvement of local communities within research to in formants as participatory practice as long as they do not tend to epistem ic justice or dehierarchisation of knowledge or do not carry political, emancipatory poten tial. The basic idea of the participatory method is rooted in the concept of pedagogy of oppressed by Paulo Freire , who taught adult literacy in 1960' in Brazil. According to him, the role of the educator was to develop in a dialogue with students a critical awareness in the process of "conscientizição", awarenessraising, based on developing awareness of the situation and the ability to understand reality in order to intervene with it and change it. Thus, museums, or cultural heritage institutions in general, can also be understood as spaces of learning: knowledge deriving from cultural heritage can be used creatively to understand sociopolit ical situations and identities and recognise the levers of political power. 9 It is interesting to observe that although collaborative practices have been introduced since 1960' , it is only since 2000' that we are speaking of participatory paradigm in museology. Around 2000, many works were published and discussed the collaboration of social/source communities in heritage preservation in museums . An influential book that stimulated the partic 9 I will not further develop the historical background of participatory methods in museum practice as I have written about them elsewhere . However, in these, I often refer to visualanthropological practices as a source of good practices, for example, in the "Navajo project" in 1966, where Sol Worth, John Adair and Richard Chalfen taught Navajo students how to make documentary films. Although their primary interest was understanding the symbolic construction of social reality using visual language among the Navajo, the project incited what was later called "indigenous media". These media let, supported and shaped the indigenous population to formulate political and emancipatory requests. Similarly, the concept of "shared anthropology" was introduced by Jean Rouche as a way of dehierarchisation and demonopolising anthropological knowledge towards Others . ipatory paradigm in museum practice was Nina Simon's "Participatory Museum" . As the director of the "Museum of Art and History" in Santa Cruz, Nina Simon has demonstrated in practice how a dead, empty, failed museum can become selfsustaining as a relevant cultural centre for a community. She wondered how cultural institutions could connect with communities and prove their values and relevance in contempo rary life. The author engaged people in the museum as cultural collabo rators . She defined "a participatory cultural institution" as a space where visitors can create, share their knowledge and experiences, and connect through content, i.e. cultural heritage . In doing so, she defined different cooperation models, referring to the work "Public Participation in Scientific Research" : "contribu tion, collaboration, and cocreation", to which she added the fourth model, "hosting" . Each model differs in the intensity of public participation and institutional control over activities. Different ways of cooperation allow visitors/participants to take an active role in creat ing representations about themselves and symbolically take over the so ciopolitical power if we understand that a museum is a public institution that gives society views or images, especially on the past, through which community continuity in space and time as identity is constructed. Par ticipatory practices in museums, therefore, also play an essential role in the empowerment and emancipation of social groups that are in any way excluded from museum contents and representations of major society. However, here lies a dilemma: is the participatory paradigm so effec tive, or is there a doubt of delusion? Marilena Alivizatou points out some limitations and criticism of participatory practices through works that show participation as a new tyranny of museums, making an illusion of dehierarchisation of power relations . Despite criti cism that "participatory measures are less transformational than hoped" concerning social inclusion, Sharon Macdonalds sees participatory prac tices in museums as worthwhile regarding civic participation and learn ing on how knowledge is constructed and fostering cocriticality . Léontine Meijervan Mensch writes that the participatory para digm is most often seen as democratising the museum process and con tent, which equally involves different levels of decisionmaking. However, participation does not guarantee egalitarian negotiation in the museum; on the contrary, relations between the museum and social groups are marked by conflicts and oppositions . Bernadette Lynch understands conflicts as a political demand. She leans гласник етнографског института сану LXXI | 188 | her assertion on political theorist Chantal Mouffe, who says that we must envisage the museum as a vibrant public sphere of opposition where dif ferent views are usefully confronted, as it is through these struggles that new identities emerge . The idea is to enable lively "ag onistic" public spheres of opposition where different hegemonic political projects are confronted . 10 Museums must go beyond the symbolic understanding of justice and al low people to meet, discuss, and argue, thus becoming genuinely "contact zones" . To enable and realise these perspectives , we need to transform our understanding of the production of knowledge in museums and make a difference in understanding the work in it and the idea of museums. I see these possibilities in addressing two museum concepts: the "postmuse um" and the museum as "a place of utopia". The concept of "postmuseum" was conceived by Eilean HooperGreen hill not to confront but to complement the knowledge achieved in the "modernist museum", seen as an authoritative holder of knowledge, inter pretation and dominant narrative. The shift happened not only from the visitor experience but additionally in terms of epistemological expe rience, the knowledge based on the everyday human experience of the visitors, engaging emotions and imagination . Alpesh Katilal Patel states that "postmuseum" offers embodied rather than visual experience and constructed collections as potential sites of contestation rather than fixed meaning. The shift from objects to audiences makes a viewer an ac tive agent in meaningmaking. The knowledge based on the everyday ex perience of the visitor is paired with the specialist knowledge: "Whereas the modernist museum transmits facts, the postmuseum tries to involve emotions and the imagination of visitors. The viewer in a postmuseum is active, not passive, a producer, not a consumer. Such a mode of view ing shifts the conceptualisation of an object as a static entity to one that is performative, and our think ing about an object as doing rather than merely being" . Barbara KirshenblattGimblett compared museums to literary utopi as and considered museums as places of utopia with the power of imag ination and worldmaking. As literary utopias use worlds, the museum: "[...] takes the world apart at it joints, collects the pieces, and holds them in suspension. Identified, classified, and arranged, objects withdrawn from the world and released into the museum are held in a space of in finite recombination. A refuge for things and people -literally, a build ing dedicated to the muses and the arts they inspire, a space in which to muse, to be inspired -the museum puts people and things into a re lationship quite unlike anything encountered in the world outside. The museum brings past, present, and future together in ways distinctly its own" . The construction of the museum narrative, built on objects, images, words and performances, gives the museums a mark of concreteness: "Thus, the museum is not simply a place for representing utopia, but rath er a site for practising it as a way of imagining" . Museums as utopian imaginations are the initiators of visions and reflections on how the world is and how it could be, both in terms of criticism and desire for change. Museum exhibitions are spaces of constructed reality, imaginative/representational realities , which act as a social bond, a call to social cohesion. A museum is an ideal form of social space that cannot exist outside of itself. Thus, the possibility, if not the muse um's task, is that it can dream with its collections and exhi bitions about a society that does not exist in reality . The idea of the utopian museum can be understood as one of the forms of an engaged, socially responsible, democratic museum, and the usefulness of KirshenblattGimblett's idea could be translated into an exhibition scenario. The capacity for imagination and the socially cohe sive role carry the potential to establish a museum that builds its value in society by cooperating with it. These theoretical starting points bring me to the questions of prac tice. Further in the text, I develop the answer to two questions. First, how, by introducing people from vulnerable groups in the museum work change their social position in terms of empowerment and improvement of their social inclusion? Second, how does the changed perspective on the knowledge achieved in museums through participatory and collaborative practices broaden our understanding of the past and enrich the interpretation of heritage? Further on, I will present three different experiences of working with different national museums and people from vulnerable groups in which I engaged a combination of ethnographic research and a more practical, collaborative engagement. I cannot describe this methodological practice as proper "Participatory Action Re search" , as described by Marilena Alivizatou , but rather as participatory museum practices influenced by the work of Nina Simon . Participatory methods were introduced to work and evaluate the results of museum practice, but not in interpreting the results in this article. In doing the latter, I critically reflect on the partici patory experience from my point of view as a observing copartici pant . Of course, this could raise the question of appropriation of the performed collective work . My intention is not to appropriate the work of others; I took care that everybodyʼs role with in the text is represented and that my role in this collaboration is reflect ed. By writing this article, I see a possibility to give a voice to projects and people who do not have access to academic writings and thus reflect on museum work as a possibility of inclusion and enrichment of the knowl edge about cultural heritage. --- THE HISTORY OF THE DEAF COMMUNITY IN LJUBLJANA During the project "Accessibility of cultural heritage to vulnerable groups", I was appointed to the National Museum of Contemporary History photo documentation department, which stores the most extensive collection of around 3 million images of Slovene territory from 20thcentury photographers. Looking at inventory books shows us many negatives dedi cated to institutions for deaf people.11 I was curious about how to interpret the photographic material and find its information since it represented the recent past of deaf people in Ljubljana. With the help of a deaf teacher of art, Petra Rezar, from the "Institute of deaf and hard of hearing in Ljublja na" and a representative of the "Slovene association of teachers of deaf", we found a deaf student of art restoration, Gašper Rems, who worked on the mentioned photographic material. During his work, Rems individually checked more than 800 negatives that carried information on deaf people and made the first selection of photos according to his interests. In the next phase, he searched for infor mation about the photos through books and archival records and inter viewed elderly deaf people while visiting two of Ljubljana's deaf organi sations. Together we spend much time on methodology: how to prepare questions for interviews, how to track information, how to search for new interlocutors, how to prepare transcriptions and many other questions. It was his first research and a new experience. It was also the first time a museum object in a national museum describing the past of a deaf community was interpreted by a deaf person. The work through interviews was necessary for the museum, as none of the curators could do it, as nobody knew how to communicate through sign language . The latter was also reflected in the level of data, as photos were stored in the museum inventory books with a pejorative connotation of "gluhonem" . This term was still used by most curators when speaking about deaf persons. Rems's work on docu mentation was to rewrite and revalorise the photo material of the deaf community in the museum. However, at the same time, his presence in fluenced the museum staff to rethink their position and their approach toward deaf persons as coworkers and possible museum visitors as well. At that time, with the help of Rems, few programs for deaf and deafblind people were prepared.12 Rems and I decided to prepare an exhibition of photographs that will present some aspects of the past of deaf people in Ljubljana. The final curatorial selection before the print of photograph ic material was done in pairs. We both had an idea of how the exhibition should look and the message to transmit. He stated in a presentation: "Be cause I am also deaf, I wanted to research the history of deaf people so that we, the deaf, can proudly show that we have a history."13 His idea of the exhibition was a clear statement of identity and the positioning of the community of deaf people as an active cocreator of the past, present and future in the majoritarian society -an emancipatory and empowering act. My idea was from the position of a hearing person and an educative one : to educate people against prejudices and overcome stereotypes toward deaf people. Our ideas did not oppose, and we joint both views through visual and textual information. The first opening of the exhibition was on 16 October 2014 in the con ference hall of the Slovene ethnographic museum as a part of the confer ence titled "Deaf community in Ljubljana in the past and present" that added a bigger picture to it. After this occasion, we established an eexhibition on the blog of the photographic гласник етнографског института сану LXXI | 192 | department of the National Museum of Contemporary History. 14 In ad dition, Tipk TV, a TV for deaf people, has done a video guide in Slovene sign language. 15 Another opening was done in "Trubar's house of literature" in the centre of Ljubljana almost a year after, on 4 September 2015. The place aims to promote the Slovene language, literature and culture. On the occasion of the opening, the program manager Rok Dežman stated that Slovene sign language is also an essential part of Slovene language and identity, but about which, unfortunately, we do not know much, and that the house should open to marginalised groups as cocreators of Slovene culture. The community of deaf people well visited the opening as the opening was taken over by the "Slovene association of organisations of deaf and hard of hearing". It was interesting to observe the importance of the exhibition for several elder people, who recognised themselves in photos and described their pride and excitement for the TV for deaf people, Spletna TV. 16 As Petra Rezar stated in the emission, the infor mation on photographs is "important for the historical memory of the deaf people". This case shows how a museum can open toward different social groups by interpreting its museum collections, validating their experi ences, and empowering their identities in the emancipatory sense. It is also a point of seeing museum collections not only as a museum end but as means and their interpretation as an ongoing process . This way, the museum gets new information that enriches its collections and gets new audiences and more -work as a catalyst of social regeneration and inclusion. --- EXHIBITION ON THE END OF WORLD WAR II AND THE REMINISCENCE OF PEOPLE WITH DEMENTIA 2015 was the 70 th anniversary of the end of World War II, and I was assigned to make a photographic exhibition on the end of the war. This historical moment in Slovenia is highly politicised, especially concerning the post war events when prisoners of war and civilians were mass murdered on demand of the newly established regime. Before I started the work on the exhibition, I was positioned as the heir of partisans on one side and the heir of a Nazi concentration camp internees. However, I shared the conviction that nobody should have been executed after the war without trials. In the National Museum of Contemporary History of Slovenia, I found more than 1600 photo negatives dated 9 May 1945, which in Slovenia, as part of Yugoslavia, was considered the "Day of victory". The date was chosen as the title of the exhibition, as today we celebrate the "Day of Europe", and with the title, I wanted to show the double meaning of the celebration. I built the exhibition concept on the observation that the totality of war surrounds us, and daily news in media made us apathetic to war atrocities. With the exhibition, I wanted people to wake up and experience the end of the war. For this reason, I have chosen big prints of 8 black and white photos transformed into 3D photographs in an anaglyph technique, 17 where looking through redblue glasses, the images will "revive" in front of the viewer to reflect the contemporary situation. For the exhibition, I was interested in photos that showed ordinary people's reaction to the end of the world war instead of official, heroic and political personalities and events. For a more vivid sensory experience, I searched for multisensorial triggers supporting the exhibition. I searched for other visual materials , looked for the music of that period and analysed photos in search of elements to touch and smell. 18 Finally, I decided to interview elders in two elderly homes in Ljubljana and found more information on what happened on 9 May 1945. Contrary to my expectations, they did not speak much about the war's end: most just remembered strong emotions of happiness but did not remember what they were doing that day. The photos of 9 May 1945 looked similar: good photographers that usually took "correct" photos took unstructured photos, like snapshots of people in the street. It was interesting to observe in a book of memories of a famous Slovene photojournalist Edi Šelhaus: 17 The work was done by a digital designer based in London, Benjamin Rančič. 18 For example, I prepared a multisensorial guided exhibition tour with some non inventoried museum objects like guns and parts of uniforms, such as partisan covers, menageries and others. In the photos, I looked for flowers blooming at that timesuch as horse chestnut and lilac and with which people decorated soldiers and tanks. --- U. Valič Lessons Learned from Applied Participatory Practices in Museums and Inclusion of People гласник етнографског института сану LXXI | 194 | "Here , however, something happened to me that should never have happened to a photojournalist. With indescribable moments of joy and happiness that the war is over, moments that only a film can preserve, I forgot my duty, to take photos. I repeat to myself today as an apology that this is human. In fact, I made only a few shots of liberated Ljubljana and the unique mood of its inhabitants" . I interpreted this phenomenon with the help of Van Genepp's concept of "rites of passage" and Victor Turner's concept of "the liminal phase": the end of the world war was like a "liminal phase" where unstructured society happened, where feelings of happiness, the horrors of war had come to an end, mixed with feelings of fear and uncertainty about the future. While preparing the exhibition, I was also working on a programme for people with Alzheimer's disease . Studies show that museum visits, programmes and museum objects as evocative objects, could provide a potential therapeutic experience to people with dementia and their caregivers by stimulating selfesteem and a sense of identity, fostering feelings of confidence and feelings of worth, fostering life review, enabling social interaction and communication, as well as encouraging cognitive stimulation . My decision was influenced on the one hand by my family situation, as my grandmother had dementia and my mother was active in the local organisation in support of people with dementia; on the other hand, by professional trends in museums, as between 2007 and 2014, MoMA launched an educative art program for people with dementia. 19 I prepared a program with the professional support of Elizabeta Štrubelj, an occupational therapist from the University Psychiatric Clinic in Ljubljana, who instructed me on the needs of people with dementia and communication with them based on "validation". Validation builds the relationship with a person with dementia on respect and recognition of what they are saying or doing and empathy with him/her in his/her situation. 20 Ms Štrubelj helped me to prepare an accompanying booklet with black and white photos from the exhibition with texts in an "easytoread" format that people could read in a nearby armchair. As some people with dementia may find moving around museums difficult and exhausting, I decided to visit them in the elderly home with some photos and some of the prepared multisensorial material. I met two groups of people in two different elderly homes. Their conditions were different: from people in the beginning stage of dementia to people who already used wheelchairs and did not speak, but they were still able to express their feelings. I took a different approach in both groups. In one group, I introduced myself and showed people the materials I brought, and we spoke about different things -the end of the war, but soon we shifted to the postwar period. In the other group, I was introduced by an occupational therapist as a person working in a museum that is interested in the Second World War, specifically the end of it. People started suddenly to speak about the war. The first to speak were persons with internment experiences in the concentration camps. After telling her story, a woman stood up, thanked and left the group. She never joined the group again. After my return in a week, the occupational therapist said that the woman cried a lot after the session but was thankful she could share her experience. Another woman burst into tears after a partisan song and explained how her entire family was killed in a partisan raid. After calming down, she said she was grateful as she could openly and safely speak about her experience. After this event, I decided to end the project later in the evening as I did not consider myself prepared enough to work with people's traumatic war experiences. I always regarded this project as a failed project and just recently looked at it from a new perspective of the museum as a space of "social healing", a place that reevokes memories in order to give a reflection on the past. In this place, people can express themselves and tell their stories without prejudice and respect. I realised that this was one of my best lessons about what a museum could be and what cultural heritage and memory do -even in terms of forced and selective forgetting at the outcome of the war conflicts. --- BRIDGING THE GAP BETWEEN THE ART MUSEUM AND THE NEIGHBOURHOOD The last example of collaboration is an experience at the National Mu seum of Contemporary Art of Romania in Bucharest. It aimed to link the museum with the people living in the quarter RahovaUranus or make it more visible. 21 My fieldwork was done through the streets of гласник етнографског института сану LXXI | 196 | Strada Uranus, Calea Rahovei and around the Flower market. The quarter was affected by Ceauşescu project: a part of the quarter was demolished to make a place for the Palace, The Romanian Academy of Science and the block of flats for the administration working in the palace; part of the quarter gave shelter to those who remained without a home. In the past, the quarter was a vivid marketplace with the stock ex change and a beer factory, but the business declined in the 1990' . The quarter has a bad reputation among the inhabitants of other, wealthiest parts of Bucharest. Historically, it was considered a quarter for immigrants from rural areas -poor and uneducated people. These views also persisted during my stay: some curators considered the quarter inhabitants poor and uneducated and the social outreach project nonsense because these people lived a very different reality with no space for contemporary art. Nowadays, the quarter is one of the "hottest spots" for real estate business and so in the process of gentrification. It is seen from the outside by the structure of homes: the quarter is a mixture be tween old and deteriorated houses and new expensive villas, which gives an idea of the social status of its population. Primarily older people live in deteriorated houses or people of Roma origins with a lack of finances and education. Roma people are concentrated in the houses around the Flower market. Many faced forced evictions due to a lack of unregulat ed procedures and insufficient legislation in denationalisation processes around 2000. The business in the Flower market is run mainly by Roma women, who control the life around the market. 22 A group of Roma women and mothers with young artists and activ ists formed the "Generosity Offensive Initiative" in 2006, which created the base for "LaBomba -Community Centre for Education and Active Art" 23 in 2009. The idea of the centre was the collaboration of professional artists and the community of RahovaUranus in improving the quality of life in the quarter by critically addressing and actively solving the problems of inhabitants. Unfortunately, by the time of my research "LaBomba" com munity centre was closed, and the initiative was in decline. However, a group of women worked on their problems of forced eviction and prepared an interactive performance, "The Subjective Museum of Living" . As the community centre closed, the quarter re mained with no cultural or artistic space, except a fancy, private event place called "The Ark" and a music festival named "Outernational Days". So it was advantageous for MNAC to cover the need for more cultural events and edu cation. However, the problem was that most of RahovaUranus inhabitants had never heard about MNAC nor ever passed the security walls of the Parliamentary Palace. Moreover, as one of the quarter's in habitants said: "People in the Flower market work day and night in few turns; they do not have time for other things, such as contemporary art." In the summer of 2017, the museum proposed that I collaborate with a German artist duo, Birgit Auf der Lauer and Caspar Pau ly, who got IFA support. The duo had experiences doing participatory art in collaboration with vulnerable groups . Moreover, Birgit was born in Romania into a Saxon family that moved to Germany. Before the artists came, I was doing ethnographic fieldwork research with interviews and observations to understand the dynamics of the quarter. Students from the Faculty of Social Sciences and Social Work, University of Bucharest, Alexandra Stef, a student of anthropology experienced in social outreach projects, and a volunteer of "LaBomba", Ioana Raileanu, who was familiar with the quarter and played the role of cultural inter preter, helped me with communication. I was introduced into the quarter through Cristina Eremia, an informal leader of the Roma women around "LaBomba". With Birgit and Caspar, we first planned to do museum visits for peo ple from the quarter nearest to the museum, and the main visitors were children and a few adults . Together, we play fully visited the exhibitions, researched artworks, drew, played games and did other things. We were helped by one of the museum guards, Adrian, who lived in Rahova and was interested in the artworks exposed in the museum. He helped us with communication to bring contemporary art closer to people, as one of the women from Rahova said: "You know, he is speaking our language". Discussion followed visit sessions, where visitors shared ideas about how to make the museum more attractive to people from the quarter and what they would bring to the museum if they could. After these sessions, Birgit and Caspar went to the quarter and did inter views, listened to people's opinions, and photographed and drew to pre pare for the final event. The final event was done on 5 August 2017. It was meant to be a night walk through the Flower market to the museum with projected light images, drawings on the streets about the ideas museum staff would bring to Rahova and an adventure in the darkness of the museum with torches and lights projections of drawings of the things that people from Rahova suggested to bring in the museum. The event was meant to allow the exchange of ideas between the museum and Rahova through light projections of images in the dark; the last was interpreted as a space that could be filled with lights of imagination. One idea was also to include women's performances from "LaBomba". However, we decided to abandon the idea and made a separate event, which caused disappointment in the "LaBomba" group, who did not participate in the event. 24 The organisation was a big challenge, new also to the museum staff. One week before the event, the museum staff declared the permission papers to the authorities and the guard service of the palace. Neverthe less, on the day of the event, we found out that the date of the event on the papers needed to be corrected. We started the projections with one hour of delay in the hope that the managing staff of the museum would solve the problem before we came to the palace's gates. Around 70 peo ple were waiting at the Flower market to attend the event. Most came from other parts of Bucharest; just a few were from Rahova, some chil dren and workers from the Flower market. The light projections were amazing and amusing; each idea was voted for acceptance by the public. Everything went well until the gates of the palace: there we were stopped by the guards who did not let us enter because of the wrong dates. Half the people left the event, blaming us for the lousy organisation or the relentless guards. In the end, the problem was resolved by a call in the middle of the night by the director of MNAC to the principal director of the protection service. Finally, we could proceed with the programme for the rest of the evening. The people who stayed understood this experience as a metaphor for the experience shared by most of the people from Rahova, who, by being Roma or poor or uneducated, are being discriminated against and left out 24 We made the performance later in September 2017. Their interactive performance, based on the methods of the theatre of the oppressed, told the experiences of forced evictions of women from the quarter RahovaUranus and Vulturilor 50. Each act of the performance started with protagonists standing still, like statues in the museum. We situated the performance in the same place as the "Marshalling Yard" exhibition, which functions as an open depo. During the performance, the visitors could move around the protagonists surrounded by red bonds and the museumʼs artefacts. The performance in MNAC was followed by a conversation organised by women of LaBomba and was a mixture of past and present situations of the quarter, joined by different actors. | 199 | side "the gates" many times in daily situations. It was a special night for those from Rahova who joined the event. As they pointed out, their voic es were finally heard. In the Parliamentary palace! Nobody related to the museum but to the Parliamentary palace, the government, and political power. Even though the main idea of connecting the neighbourhood was not successful, in a symbolic way, presenting their ideas in the museum was seen as a takeover of social and political power. This case, even minor to the existing problems of the Roma population in Romania, shows that the museum should support the communities, es pecially those considered oppressed by the ruling majorities and the gov erning bodies. Museums should raise their voice and confront the govern ing bodies to show the irrationalities of ruling models. Antagonisms and conflicts should not be considered problematic but rather a hand open ing "the gates" to a discussion about inequalities and discrimination and a way to empower minorities to speak about themselves. --- CONCLUSION Three cases from national museums show that opening a museum -as a space of multisensoriality, imagination, possibilities and antagonism -to the participation of people from vulnerable groups enriches and broadens our knowledge of cultural heritage as well as changes our understanding of a museum not only as a space of objects, but a space of social relations against sociopolitical discussions. By engaging people from vulnerable groups in collaborative projects, the museum can reflect on its relation toward these groups and, outside of its spaces, address and raise awareness against social exclusion's conditions. People from vulnerable groups cannot often express their past and cultural identities in national museums. However, the museum is a safe space of creative discourse, offering valuable selfpresentation opportunities. In that case, it can stimulate processes of "subjectification" , a possibility of expressing individuals as responsible beings that leads to empowerment and emancipation. Of course, this kind of work opens a chain of ethical questions, but sometimes it is worth it if we want museums to be relevant places for society. Moreover, why do cultural anthropologists matter in contemporary museums? Methods that cultural anthropology developed through the 20 th century are built upon longstanding and ethical relations with people, recognising and questioning the processes of alterity and constructions of Otherness. With collaborative practices, contemporary anthropology has set theoretical and methodological approaches to epistemic justice --- | 200 | and dehierarchisation of knowledge , which should be the starting position in contemporary museology and museum practice.
In the article, the author reflects on contemporary museology and cultural an thropology paradigms that focus on participation and collaboration to include people from vulnerable groups in the museum work. The article presents how the paradigm shift to participation or collaboration changes the epistemolog ical value of experiential knowledge related to cultural heritages and the way museums work. Finally, the author shows how three experimental participa tory, collaborative practices in national museums with the change of perspec tive on people's role from passive visitors to active collaborators also changed the perspective on their vulnerability and presented a valuable tool for better social inclusion. Through participatory approaches, museums can gain more social relevance in contemporary society.
Introduction Xenotransplantation is 'the practice of transplanting, implanting or infusing cells, tissues or organs from one species to another' . It may involve internal or external xenogenic therapies 1 designed as a temporary bridging device or as a 'final solution to end-stage organ failure' . For the purpose of addressing organ scarcity, scientists have generally experimented with organs and tissues from different breeds of pigs. However, towards the end of the 1990s, virologists began to query the safety of xenotransplantation due to the possibility of infectious diseases caused by porcine endogenous retroviruses. A number of scientists called for a moratorium until the controversy could be resolved through open debate and public policy. While some countries adopted a ban, others pursued a permissive stance on clinical xenotransplantation. A de facto moratorium was adopted in Canada following a novel experiment in public consultation. In Australia, the xenotransplantation controversy was sparked by a clinical trial involving the use of porcine cells to treat diabetes. Following a national inquiry, the Australian National Health and Medical Research Council imposed a 5 year moratorium on clinical trials involving animal-to-human transplantation. Sobbrio and Jorqui observed that public engagement on xenotransplantation in Canada and Australia represented significant developments in 'experimental democracy' . They wrote, Both the Canadian and Australian experiences shared certain important features: they were launched by the government as the expression of a more trusted and democratic social contract between institutions and citizens; they aimed at engaging citizens in more direct decision-making; they explored and inquired into relevant issues about technological innovation and social change; and they attempted to introduce a new concept of scientific citizenship through the identity of the citizen scientist . A number of publications have analysed the Canadian and/or Australian xenotransplantation controversies. Such work generally adopt either a national or comparative perspective . Comparing national approaches and policies on clinical xenotransplantation is an important method of social inquiry since it allows for an analysis of convergences and divergences in public policy and scientific culture in different countries . Scholars working on xenotransplantation come from diverse disciplines including medicine, law, bioethics, sociology, anthropology, literature, philosophy, political science, communication studies, human animal studies and science and technology studies. Aside from the relevant biomedical literature, scholars from the humanities and social science have analysed expert discourse, policy instruments, government reports, public debate, community engagement and the processes of facilitating, collecting, surveying and representing public opinion on xenotransplantation. Though infectious diseases have been a focus of research in the biomedical science, it has generally been a neglected topic in social science inquiry on xenotransplantation. As such, this paper asks, what new knowledge concerning biological contagion was uncovered during the implementation of the xenotransplantation moratorium in Canada and Australia? What are the social and policy ramifications of this knowledge? A temporary prohibition on clinical xenotransplantation was not the only policy ban in the context of human experimentation. In 2007, the Australian ban coincided with a temporary global moratorium on the transplantation of human islets issued by the Juvenile Diabetes Research Foundation International . The JDRF moratorium took effect in a number of countries including Canada and Australia. This paper examines the co-existing moratoriums on islet allograft and xenograft to consider its wider ramifications for public policy and research governance. In addition to a comparative analysis on the Canadian and Australia responses, this paper also explores islet transplantation within the historical context of diabetes research. Biomedical research on the practice of islet grafting has a long history extending back to the late nineteenth century. Though Canada and Australia are Commonwealth countries, the cultures of science and regulation in these jurisdictions exhibit differences both across borders and across timescapes . 2 Situating the controversy over xenotransplantation in its historical context, can inform our understanding of continuity, contingency, disruption and anticipation in the trajectory of scientific research on islet allograft and xenograft. Following comments made by Daar, commentators in the xenotransplantation debate often reiterate that 'viruses do not carry passports' . Based my reading of documents from diverse sources, I will illustrate that viruses not only evade national borders, they also do not adhere to our conceptual boundaries and disciplinary categories. The Canadian and Australian moratoriums on experimental islet transplantation clearly demonstrate that the discourse of contagion is equally applicable to both allotransplantation and xenotransplantation. Through a historical and comparative narrative, I offer an alternative perspective on the xenotransplantation controversy and its significance for research regulation and public understanding of contagion in transplantation medicine. My paper consists of five components. In Part I, I provide an overview of the history of pancreatic islet allo-and xenotransplantation to treat diabetes. Part II recounts the beginning of the xenotransplantation controversy as it unfolded in Europe and the US including the introduction of global regulations for clinical xenotransplantation. Parts III and IV review national responses on xenotransplantation in Canada and Australia, respectively. Finally, in Part V, I discuss the problem of contagion in organ and tissue transplantation with a focus on the moratorium issued by JDRF International. The overlap between the Australian ban on xenotransplantation and the global moratorium on islet allotransplantation offer a key site to investigate the limits of regulatory responses to clinical experimentation and public health risks. Moreover, controversies over organ and tissue transplantation implicating species categories complicate and confound our assumptions regarding the relationships between human and animal, between routine surgery and clinical experimentation, between biomedical science and social science, and between disease risks and material contagion. A brief history of Pancreatic Islet Xenograft and Allograft to treat diabetes Diabetes, or diabetes mellitus, is a metabolic disorder characterised by an excessive level of glucose in the blood. According to the eminent diabetologist, Robert Tattersall, 'diabetes is not a single disease but a syndrome with at least fifty possible causes' . The body either does not manufactured enough insulin or the cells do not respond effectively to the insulin produced. Insulin is an essential hormone secreted by the pancreas. It enables the body's cells to absorb glucose and convert it into energy required for muscle and tissue function. Since a person with diabetes is not able to properly metabolise the glucose in their blood, he or she may experience raised blood sugar or hyperglycaemia. Over time, an excessive level of blood sugar may lead to tissue damage and a range of lifethreatening health complications including blindness, kidney failure, cardiovascular disease and limb amputations. In her article for The New York Times, physician, Abigail Zuger, described the importance of insulin as follows: Without insulin the body is unable to use glucose, its primary fuel … sugar and starch in the diabetic's diet turn into poison, clogging the bloodstream with unusable glucose: the glucose is eliminated in sweet-tasting urine as the body's cells literally starve in the midst of plenty. Insulin-deficient patients are both thirsty and ravenous, but the more they eat, the faster they waste away . The term 'diabetes' derives from the Greek word 'diabainem' meaning 'to pass through' or 'to siphon' . The ancient Greeks understood diabetes as a condition in which food and liquid intake passes through the body instead of fuelling it. In the nineteenth century, to categorise different types of diabetes, French physician Etienne Lancereaux distinguished between diabete maigre and diabete gras . Today, these categories are revised as Type 1 diabetes and Type 2 diabetes. While the former is common among young people, the latter is generally diagnosed in the adult population. The former is an autoimmune disease associated with the destruction of insulin-producing islet cells. The latter is a common form of diabetes arising from the development of resistance to insulin. The risk of insulin-resistant diabetes increases with age. In the late nineteenth century, a significant turning point in the scientific understanding took place when Oskar Minkowski and Joseph von Mering demonstrated that diabetes was induced by the removal of the pancreas. Minkowski also demonstrated that the auto-transplantation of pancreas fragments in depancreatised dogs could temporarily prevent diabetes . Following the work of Minkowski and von Mering, physicians began to conduct experimental transplants using pancreatic tissue in an attempt to ameliorate diabetes. In December 1893, Patrick Watson Williams performed a xenograft to treat a 15 year old patient critically ill with diabetes at the Bristol Royal Infirmary . With the assistance of his surgical colleague, William Henry Harsant, Williams implanted three fragments of ovine pancreas into the subcutaneous tissue of the patient's breast and abdomen. Each fragment was comparable in size to a Brazil nut. The tissue was procured from a sheep 'freshly slaughtered.' In addition to the ovine graft, Williams also prescribed extracts from minced sheep pancreas as oral therapy. Though the patient's blood glucose fell after the operation, his condition deteriorated. He died in a diabetic coma 3 days later. A decade later, James Allan, a physician at the Glasgow Infirmary, instructed his surgeon to repeat Williams' experiment using the pancreas of a cat in 1903. 'I wished a sheep's pancreas, but this was deemed impracticable, ' Allan reported. 'Dr Barlow performed the operation skilfully … But the final result has been a failure' , 711). The diabetic patient died 2 weeks after the transplant. As an alternative to xenografts, surgeons also experimented with human pancreatic transplantation. In Australia, the earliest record of such surgery took place at the Launceston General Hospital in Tasmania. The operation was performed by the Surgeon Superintendent, Dr John Ramsay, in 1911. In an unpublished paper, Ramsay documented that he had the opportunity to perform an experimental procedure when a young male patient suddenly died of a heart condition. 3 He excised a small portion of the tail of the cadaveric pancreas. Ramsay then grafted the partial pancreas into the abdomen of a 59 year old female diabetic. Within a week, the operation led to a gradual reduction in the level of glycosuria . Indeed, Ramsay even reported that the lowest level of glycosuria fell to 'practically zero' . In subsequent days, however, it rose again to pre-operative levels indicating graft failure. The implanted tissue was eventually removed when the site of the surgery became inflamed. The patient lived for another 7 years after the transplant surgery. Following Ramsay's experiment, Frederick Charles Pybus, a surgeon from Newcastle-upon-Tyne, also attempted allotransplantation at the Royal Victoria Infirmary in 1916 . Pybus grafted fragments of cadaveric pancreatic tissues into the abdomen of two diabetics. Though there was a mild reduction in glucose excretion in one of the patients, neither transplant was successful. One patient died 3 months after the operation. The second died 3 years later. Pybus concluded, … not much can be said about the principles of grafting, but it seems that until we are able to understand them … then we must continue to fail in such operations, although they may appear the most rational treatment for the disease for which they were attempted . As is well known, Frederick Banting and colleagues isolated insulin in the laboratories of Toronto University during the inter-war period in 1921. Though other researchers also conducted experiments to produce insulin, it was the Canadian researchers who embarked on clinical trials and commercialised their research for widespread market distribution. Not long after the successful isolation of insulin, Banting also attempted a pancreatic autograft in a dog though without success . After the Second World War, the field of organ transplantation emerged following successful kidney transplants between twins. In February 1963, Claude Hitchcock performed a renal allograft and xenograft on a 65 year old female diabetic with end-stage renal failure . Hitchcock was the chief surgeon at Hennepin County Hospital in Minneapolis. Since renal allograft was rejected after 3 days, Hitchcock removed and replaced it with a kidney from a baboon. The baboon kidney functioned for 4 days before the patient died. Hitchcock described his experiment as the 'first baboon renal heterograft' . 4 Three years later, in December 1966, William Kelly and Richard Lillehei performed the first successful pancreas transplant. A 28-year old patient with Type 1 diabetes received a pancreas segment along with a renal graft and duodedum. Following the transplant, the patient was insulin independent for 6 days. She received irradiation therapy to treat the development of graft pancreatitis. Due to organ rejection, both the kidney and pancreas were later removed. The patient died of surgical sepsis 2 months after the operation . Today, diabetic patients may be offered either or both kidney and pancreas transplants depending on a number of considerations including the patient's renal function and the availability of organs. These procedures are termed simultaneous pancreas and kidney transplant , pancreas after kidney transplants , pancreas transplant alone and kidney transplant alone . By contrast to pancreas and kidney transplantation, a simple and less invasive alternative is islet transplantation. The objective of such procedures is to infuse a sufficient quantity of islet cells to control the level of blood glucose and, thereby, overcome the need for exogenous insulin. Insulin-producing beta cells comprise only 1-2 % of the pancreas. Once the required tissue is isolated, a laparoscopic procedure is performed under local anaesthetic to implant the islet cells. Gruessner and Gruessner suggested that a pancreas transplant could be supplemented with an islet transplant to facilitate continued insulin-independence . Through successful islet transplants, patients with renal function can avert the need for a kidney transplant. Islet transplantation is generally prescribed for Type 1 diabetes patients with unstable diabetes and severe hypoglycaemia unawareness. It is not advisable for all diabetic patients due to the scarcity of available islets and the adverse sideeffects of immunosuppression drugs. Similarly to the process of extracting insulin, the separation of islets from pancreatic tissue is a difficult and complex procedure. Credit is attributed to Paul Lacy and his colleagues who invented a collagenase digestion technique necessary to isolate pancreatic islets . In 1970s, scientists demonstrated that islet transplantation could reverse diabetes in rodents, dogs and monkeys . The first human islet allograft was performed in 1974 using cadaveric islet cells . However, the procedure was unsuccessful possibly due to the effects of immunosuppression drugs. It was not until more than a decade later that Sharp and Lacy performed the first successful islet cell transplant . After the operation, the patient was insulin-independent for almost 1 month. Though a modest achievement, this result was nevertheless a positive milestone for the field. Transplant surgeon, James Shapiro, has speculated on the potential efficacy of islet transplantation if immunological barriers can be resolved. In an article commemorating the discovery of insulin, he commented, … an islet transplant could function for the entire lifetime of the patient, as long as immunological damage from recurrence of autoimmunity or allograft rejection is prevented. The patient who has maintained islet function for the longest period to date received a transplant of her own islets after total pancreatectomy at the University of Minnesota over 16 years ago and she remains insulin independent ). Islet autotransplantation is generally performed for patients with chronic pancreatitis following an operation to remove the pancreas. Since the patient does not require the use of immunosuppressive drugs, there is a greater likelihood of islet survival and, thus, islet function is retained for a longer period than in the context of an islet allograft. In parallel with developments in islet allotransplantation, scientists have also begun to experiment with porcine islets. Just over a century after Watson Williams attempted to transplant ovine pancreatic tissue, researchers have revived xenotransplantation as a possible therapy to cure diabetes and other conditions. Porcine islets have been sourced from fetal, neonatal and adult pigs. Source pigs may be wild-type or genetically modified. Pigs are an ideal source of islet cells because they are readily available, breed quickly, produce large litters and display insulin secretion patterns comparable to those found in humans . Porcine insulin was used to treat diabetics for many decades. The hyper-acute rejection of pig tissue may be ameliorated through cloning and genetic modification. Though pigs are generally the preferred source animal, researchers have also experimented with islet cells from other species including cows, rabbit and fish . By comparison to non-human primates, pigs pose less disease risks and less ethical concerns since they are lower on the evolutionary scale . The first islet xenotransplantation clinical trial was performed by Carl-Gustav Groth, the former Chief Physician of Transplant Surgery at Karolinska University Hospital, in Huddinge, Sweden. Though Groth first conceived of the idea in the mid-70s, it was not until the 1990s that he performed his clinical trial. Between 1990 and 1993, Groth treated ten participants with islet cells from porcine foetuses . The pig cells were either transplanted into the kidney capsule or infused into the intra-portal vein. A subsequent kidney biopsy identified viable islet cells and a related hormone called glucagon indicating insulin secretion. Though the trial did not lead to any reductions in the participant's insulin requirements, it did offer valuable preliminary data on graft function and indication of long term survival of porcine cells in the human body. Two years later, another team of Swedish scientist attempted to treat two dialysis patients with animal external therapy. Patient blood was circulated through pig kidneys for over an hour before it was returned to the patient's body . Groth's work has inspired other scientists to pursue islet xenograft through animal experimentation and clinical trials. A number of studies have demonstrated that porcine islet xenotransplantation could reverse diabetes in non-human primates for at least 6 months . Islet xenotransplantation clinical trials have also been conducted in several countries including Mexico, Russia, China, New Zealand and Argentina. Some of these trials indicate that islet xenotransplantation reduces the required daily dosage of insulin and the incidence of hypoglycaemia . However, in some countries, the development of islet xentransplantation was halted for several years due to public health concerns regarding the risks of infectious diseases. In the next section, I will address the global public controversy over xenotransplantation and proposals for a moratorium on high-risk research. The Publics in/and Xenotransplantation: initial responses to the risk of retroviral contagion In the early 1990s, the field of xenotransplantation revitalised its research agenda with the announcement of the first transgenic pig in Cambridge, England . Named Astrid, this pig was produced by British firm, Imutran. Astrid was engineered with a gene-human decay-accelerating factor -to inhibit immunological rejection of porcine organs and tissues in humans . Two years later, Imutran announced the results from its cardiac xenograft experiments in monkeys. Two out of its ten cynomologus monkeys survived for more than 60 days after their native heart were replaced with a heart from a transgenic pig . This news was welcomed by biotechnology industry and positively reported in the media. One journalist equated Imutran's achievement to a significant milestone in organ transplantation declaring, It is the most exciting breakthrough since the first heart transplant operation was performed by Christian Barnard in 1967 . Perhaps unbeknown to the journalist, Barnard also performed two cardiac xenotransplants in Cape Town, South Africa. Due to a lack of available donor hearts, Barnard resorted to hearts from non-human primates as a bridging device. 5 Initially, he implanted a baboon heart into a 25 year old female patient. Barnard then repeated the procedure transplanting a chimpanzee heart into a 60 year old male patient. The survival periods were poor in both cases: 5.5 h and 4 days, respectively. Although Barnard had planned to continue performing xenotransplantation, he subsequently abandoned his idea conceding that he 'became too attached to the chimpanzee' . As a consequence of the positive results attained by Imutran, the company was acquired by the Swiss pharmaceutical corporation, Sandoz, in 1996. Sandoz had intended to develop xenotransplantation as a clinical therapy. By the mid-nineties, xenotransplantation attracted considerable venture capital. Towards the end of the decade, Persidis reported that there were a total of 13 companies pursuing research in xenotransplantation . Solomon Brothers proposed what appears now to be an overly optimistic financial assessment for such research. They claimed that the market for xenotransplantation could be worth approximately $6 billion by 2010 . In anticipation of possible clinical trials, government agencies and NGOs began to consider the ethics and regulation of xenotransplantation. The Nuffield Council on Bioethics, an independent British charity, conducted the first public inquiry on the topic. In March 1996, it issued an influential report titled, Animal-to-Human Transplants: The Ethics of Xenotransplantation. The Council's report concluded that it is 'ethically acceptable' to use pig organs and tissues for transplantation given the scarcity of human biological material . Adopting a precautionary approach on xenotransplantation, the report recommended the establishment of an advisory committee to oversee and monitor xenotransplantation research and clinical trials. According to Sobbrio and Jorqui, the Nuffield Council report was innovative since it was the first attempt to apply the precautionary principle to protect public health beyond the field of environmental science and humanities . In the following year, an interdisciplinary committee appointed by the UK Department of Health put forward a comparable report. Commonly known as the 'Kennedy Report' after its chairperson, Sir Ian Kennedy, this document reiterated some of proposals made in the Nuffield Council report . Following both reports, the government promptly set up the UK Xenotransplantation Interim Regulatory Authority . Inter alia, the terms of reference for UKXIRA instructed the authority to provide advice to government on 'safety, efficacy and considerations of animal welfare and any other pre-conditions for xenotransplantation for human use, and whether these have been met' . In March 1997, a shift in the trajectory of xenotransplantation research occurred when leading virologist, Clive Patience and his colleagues alerted scientists and the general public to the risks of infectious diseases associated with Porcine Endogenous Retroviruses . Endogenous retroviruses are found in the genome of all mammal species. Since porcine retroviruses are embedded in the swine genome, it would be difficult to selectively breed pigs free of PERV and other pathogens. The expression of PERV DNA has been found in a wide range of pig organs and tissue including liver, lung, kidney, heart, pancreas, skin, blood, endothelial cells and bone marrow cells. Following in vitro laboratory experiments, Patience et al demonstrated that human cell lines could be infected by two strands of porcine retroviruses . In vitro infection does not necessarily lead to in vivo infection. Nevertheless, the possibility of PERV infection needs to be taken seriously given past precedents for animal-tohuman viral transmission . The term 'xenozoonosis' was coined to refer to 'an infectious agent introduced to humans by xenogeneic tissue' . The results from in vivo PERV studies catalysed a public debate within the scientific community and beyond on the ethics of conducting research posing public health risks. Following the paper by Patience et al, FDA researchers confirmed the risks of cross-species infectivity due to PERV in a similar experiment . As a consequence, the FDA suspended xenotransplantation studies for a period of 5 months to introduce additional regulatory measures. Before clinical trials could resume, investigators were required to revised consent forms and introduce surveillance procedures to screen source animals and monitor recipients for possible PERV infection . The public debate over retroviral risks of xenotransplantation became further complicated by in vivo studies on cross-species infection post-transplantation. PERV transmission and infection has been documented in laboratory animals but not in human patients. For example, diabetic immuno-compromised mice were infected by PERV following transplantation of porcine islet cells . In August 1998, Swedish scientists published two papers in The Lancet. No PERV infection was found the blood samples obtained from ten diabetics who had undergone islet xenotransplantation . Similarly, there was also a negative result on PERV transmission involving two dialysis patients exposed to procine xenoperfusion . In the following year, the lack of PERV infection was also confirmed in a large study of 160 patients published in Science . This study consisted of patients from a number of countries who had undergone different types of therapies involving the use of animal tissue. Some participants received porcine islet cells to treat diabetes or temporary pig skin grafts to treat severe burns. Most of the cohort previously participated in a Russian xeno-perfusion experiment to assess an 'immunotherapy' ). Due to their clinical results, the authors of the study advocated the use of 'closely monitored clinical trails' to evaluate the efficacy and safety of porcine xenogenic therapies ). However, in an editorial comment, virologist, Robin Weiss, urged caution given the nature of epidemiological research. He argued that 'no evidence of risk' is not the same as 'evidence of no risk' ). Shortly after Patience et al published their research results, Fritz Bach initiated a call for a national review and moratorium on xenotransplantation clinical trials. Bach is a prominent transplant immunologist and the Lewis Thomas Distinguished Professor of Immunology at Harvard Medical School. Notwithstanding his strong commitment to xenograft research, Bach argued against the premature introduction of such experimental procedures . He advocated for public debate and input to determine whether or not it was justifiable to undertake the research notwithstanding the inherent public health risks. Bach called for a moratorium until ethical questions could be resolved. In his view, ethical issues preceded technical scientific considerations. Bach attracted support for his advocacy from some peers who assisted him to write papers. With eight coauthors, Bach published a paper on their policy approach on xenotransplantation research in Nature Medicine in February 1998 . Similarly, in a 2007 paper written with Ivinson, Bach posed an ethical challenge to their scientific colleagues asking, Why should we not apply the principle of informed consent to entire communities when it is the community as a whole that is being exposed to the risk? At the very least, informed representatives of the public should be given an opportunity to participate actively and meaningfully in the decision about whether and under what conditions society is exposed to the risk. If it is unethical to foist a particular medical risk on a patient, is it not equally unethical to expose the public to a risk without first considering their opinion? . Bach et al argued that a moratorium was not 'anti-science' . Rather, a temporary ban on xenotransplantation would afford the public an opportunity to participate in the debate. In other words, it is 'a way of respecting the rights of the public, thus preserving the trust of the public in science' . This proposal is comparable to that required for individuals to participate in biomedical research. It has been described a form of 'societal consent' , 'community consent' , or 'social informed consent' . If the informed consent of the relevant community is not forthcoming, then xenotransplantation clinical trials should not proceed. Across the Atlantic, the Council of Europe unanimously adopted a recommendation for a legally binding moratorium on xenotransplantation clinical trials on the basis of the precautionary principle in 1999 . 6 A call for public participation was already recommended by the Institute of Medicine in its 1996 report on xenotransplantation . However, the proposals put forward by Bach and his colleagues were not accepted in the US. David Sachs and colleagues wrote a letter in response . Sachs is the Paul S Russell Professor of Surgery and Immunology at Harvard Medical School and Director of the Transplantation Biology Research Center at the Massachusetts General Hospital. Sachs et al agreed with Bach et al on the need for caution. However, the former group believed that local Institutional Review Boards and the FDA could adequately carry out the necessary evaluation and risk assessment for drug testing. Sachs et al also emphasised that xenotransplantation is 'currently seen as the most promising, near-term solution to a severe shortage of human tissues and organs' and that 'to convene new national bodies to consider the ramifications … would undoubtedly lead to unnecessary delays and avoidable loss of life' . The FDA aligned with the position advocated by Sachs and colleagues. At a conference convened by the National Institutes of Health in January 1998, the Acting FDA Commissioner, Michael Friedman, stated that the request for a moratorium was a 'highly valuable' part of public debate but added: 'We believe that it's important to set up a framework to responsibly conduct research' . The FDA position is consistent with the case-by-case approach adopted at the time by UKIXRA . The arguments for and against a moratorium on xenotransplantation clinical trials attracted commentary from physicians in the US, Europe and Australia. Daniel Salomon et al, speaking on behalf of the American Society of Transplant Physicians and the American Society of Transplant Surgeons, dismissed the proposals presented by Bach et al as 'at best, [the opinion of] a minority among US transplant professionals' . They believed that Bach et al had overestimated the infectious risks associated with xenotransplant experiments. On the other hand, Peter Collignon, an infectious disease expert from Australia, went even further. In his view, a national approach was inadequate since viruses are not necessarily contained by politico-juridical borders. As such, he argued for stringent global regulation of xenotransplantation clinical trials with 'uniform and enforceable control procedures' . He warned of the possibility of inadequate regulation of research in some jurisdictions. Collignon wrote, 'because of the demand for organs, countries with less stringent regulations may become havens for the performance of less regulated, and therefore more dangerous, xenotransplantation procedures' . He made a compelling argument for effective regulation by underscoring the public health risks of xenotransplantation as follows: What we are collectively doing now and planning to do in the future with xenograft transplants creates the ideal conditions for animal viruses or infections to cross the species barrier into humans and proliferate … Xenotransplants thus represent one of the best experiments we could devise to 'create' new infectious agents. It would be somewhat paradoxical if the main legacy of modern medicine's involvement in transplantation were another infection such as HIV . Due to the global dimensions of the public health risks, the World Health Organisation became involved in xenotransplantation research adopting a 'pro-active role' . Since its first meeting in October 1997, WHO has worked with the International Xenotransplantation Association to issue a series of guidance documents on the prevention and management of infectious diseases in the context of clinical xenotransplantation . In collaboration with the University Hospital of Geneva, the IXA and WHO has also established a website to document xenotransplantation clinical trials around the world. Thus far, their website -'Inventory of Human Xenotransplantation Practice' -has collected data on 34 clinical trials. 7 The inventory indicates that xenografts experiments have been performed in Europe, North America, Africa, Asia and the Pacific. As events unfolded, some of the concerns raised by Collignon became prescient. A controversy ensued over a clinical trial conducted by Dr Rafael Valdes Gonzalez at the Frederico Gomez Children's Hospital of Mexico in Mexico City. Valdes had collaborated with researchers in Canada and New Zealand. Since 2001, he has treated at least 22 minors with Type 1 diabetes -including two Canadianswith neonatal porcine islets and Sertoli cells . These cells were placed in a collagen coated device subcutaneously implanted in the abdomen. Islet cells were combined with Sertoli cells since it is believed that the latter induces immunological tolerance. The study sought to build upon the work of Groth et al undertaken in the previous decade. Valdes et al claimed that their clinical trials produced promising results. Two patients become insulin-independent for several months. Half of the cohort experienced a 'significant reduction' in insulin requirements . However, upon public announcement of the study at a scientific conference in 2001, the trial attracted strong public criticisms from IXA members . A prolonged dispute took place between Valdes and IXA scientists . Due to pressures from the international scientific community, Mexican xenotransplantation was eventually terminated by local government authorities. By contrast to Valdes' practice, a xenotransplantation clinical trial outsourced by a New Zealand company to a research institute in Moscow was not contested by the scientific community. These trials voluntarily adhered to the guidelines issued by the FDA which included provisions for the surveillance and risk management of infectious agents . Following the controversy over xenotourism in Mexico, the World Health Assembly adopted a Resolution on Human Organ and Tissue Transplantation in May 2004. WHA Resolution 57.18 was passed by 192 countries. It urges Member states 'to allow xenogeneic transplantation only when effective national regulatory control and surveillance mechanisms overseen by national health authorities are in place' . Xenotransplantation clinical trials should only be permissible in countries with a welldeveloped regulatory framework to oversee high-risk biomedical research. In the absence of stringent regulations, clinical xenotransplantation would pose a global public health risks. In addition, WHA Resolution 57.18 also advises Member States to engage in the harmonisation of regulatory practice and to 'support international collaboration and coordination for the prevention and surveillance of infections resulting from xenogeneic transplantation' . Consistent with the global approach, permissive law on xenotransplantation was enacted in Switzerland in 1999 . Xenotransplantation is permitted subject to prior authorisation and due compliance with regulatory requirements. Swiss interests in xenotransplantation is linked to commercial investments in research made by Norvatis . On the other hand, xenotransplantation research was also contested by political parties and NGOs including the Green Party, the Social Democratic Party, the Basel Appeal Against Genetic Engineering, Greenpeace Switzerland, Physicians against Animal Experimentation and the Swiss Animal Protection. The local public debate on xenotransplantation began in the mid-1990s. According to Griessler, 'the debate was neither extensive nor continuous and only of concern to a small group of informed actors from research, parliament, public administration and stakeholder organizations' . A diverse range of views on xenotransplantation was canvassed in the federal parliamentary debates. Though a proposed bill banning the procedure was introduced into the Swiss parliament, it was defeated towards the end of 1999. In the following year, at the 'PubliForum'-a consensus conference on transplantation medicine-a majority of lay participants affirmed their support for xenotransplantation research . Notwithstanding public objections to xenotransplantation among sections of the community, the introduction of permissive laws sought to protect local research and economic interests in the Swiss pharmaceutical industry. The conflict between global science and local concerns regarding public health and patient safety have taken place in other parts of the world. As foreshadowed, I will explore comparable developments in Canada and Australia in the following two sub-sections of this paper. --- The Xenotransplantation controversy in Canada Though Bach was not able to substantively influence the policy discourse in the US, he did do so across the border. In February 1998, the Canadian Broadcasting Corporation hosted a debate between Bach and Daniel Salomon on national radio. 8 Bach also co-authored a paper for the Canadian Medical Association Journal with neurologist, Adrian Ivinson . They explained their argument for public participation by drawing an analogy with the controversy over genetically modified food and referring to Hendrik Verfaille, the President of Monsanto. In his pledge for a 'new company, ' Varfaille stated: We thought we were doing some great things. A lot of other people thought we were making some mistakes. We were blinded by our own enthusiasm. We missed the fact that this technology raises major issues for people-issues of ethics, of choice, of trust, even of democracy and globalization. As we tried to understand what had happened, we realized that we needed to hear directly from people about what they thought, what their concerns were and what they thought we ought to do. If we are to close the gap between those who believe in the benefits and those who have concerns, then something has to change . Given the above comments, Bach and Ivinson argued that public consultation is both an ethical approach and sound business practice. Their call for meaningful public engagement was taken particularly seriously in Canada where there is a long tradition of public consultation in policy-making . In the context of national science policy, Canadian scholar, Einsiedel and her colleagues, positioned their country between the US and Europe . There is a lack of polarised views in Canada as compared with other jurisdictions. Consistent with their moderate approach on genetically modified food, Canadian stakeholder groups for animals tend to advocate for animal welfare rather than animal rights. In the US, the regulatory style is defined by a 'more adversarial culture' whereby stakeholders tend to rely on the judicial systems to pursue their claims and interests . This is demonstrated by the legal suits filed by Campaign for Responsible Transplantation . CRT was established by Alix Fano in New York. It is opposed to all forms xenotransplantation. CRT has taken legal action against the FDA and contested the appointment of committee members to the Secretary's Advisory Committee on Xenotransplantation . SACX was set up by the Department of Health and Human Services to review xenotransplantation policies in the US. Fano maintained that the majority of committee members were scientists with a vested interest in xenotransplantation. Hence, she described the activities of SACX as a case of the 'fox guarding the hen house' . Similarly, in the UK, the practice of xenotransplantation was contested by the animal rights group, Uncaged. In September 2000, Uncaged published a series of articles drawing upon leaked documents on the operations of Huntingdon Life Sciences in Cambridge . Huntingdon was contracted to perform xenotransplantation experiments on behalf of Imutran. The leaked documents exposed breaches of laboratory standards, undue suffering of animals and inaccurate reporting of scientific results. Imutran's attempt to secure an injunction to restrain the publications made by Uncaged was unsuccessful. Subsequently, Imutran terminated it research activities in the UK and relocated its work to an animal laboratory in the US . By contrast to the US and UK, the Canadian approach emphasized collaboration and representation. Community consultation is a key process for achieving public consensus. In addition, the xenotransplantation issue was also shaped by a preceding controversy concerning the contamination of the Canadian blood supply. As a consequence, administrators took extra precautions to pursue a 'more pro-active' stance on risk management in transplantation than in the past . Towards the end of 1997, Health Canada appointed an expert advisory committee to convene a National Forum on Xenotransplantation. As in other jurisdictions, the committee comprised of experts from the biomedical and social sciences including surgeons, veterinarians, virologists, lawyers and philosophers. The forum addressed the clinical, regulatory and ethical aspects of xenotransplantation. It recommended that 'the public must be involved in all stages of discussion on these issues and have their perspectives incorporated into decision-making' . As a consequence, a planning workshop was held in April 2000 to design a process of public consultation with stakeholders. Following the workshop, Health Canada engaged the Canadian Public Health Association to organise an arms-length public consultation. In turn, CPHA hired the Public Advisory Group to carry out the public consultation . Prior to the work of PAG, the Proposed Canadian Standard for Xenotransplantation was issued for public comment in 1999. The proposed standards were written by members of the expert advisory committee. It was intended for the regulation of xenotransplantation clinical trials in Canada. PAG commenced the process of public engagement in 2001 with an education and awareness program. Given the Canadian draft standard on xenotransplantation, their public consultation focused on one overarching question: 'should Health Canada proceed with xenotransplantation and, if so, under what conditions?' . PAG sought public input through two approaches: an open model and a representative model . The first approach surveyed public opinion through different modes of communications including website questionnaire, stakeholder mail survey and informal feedback through letters and email. The second is based on a large telephone poll and a series of citizen jury or citizen foras. A total of 1519 Canadian participated in the telephone survey which involved answering 60 questions . PAG held six forums at regional sites across the country. Similarly to the telephone poll, invitation to attend the citizen forum was based on a random sampling process. The selection of participants was determined mainly on demographics. Over two and half days, a total of 107 participants attended presentations given by experts on different aspects of xenotransplantation. The expert panel comprised of experts in the field of transplantation, infectious diseases, law, bioethics, animal welfare and consumer health. Participants had an opportunity to pose questions to presenters and discuss matters among themselves. Data from the citizen jury was obtained through the proceedings and a participant survey. PAG concluded that when participants were provided with information, there was a greater likelihood that they would oppose xenotransplantation. Following the public consultation, PAG prepared a report which put forward seven recommendations. The first recommendation advised that Canada not proceed with xenotransplantation clinical trials. The report concluded that 'the majority of informed Canadians do not support xenotransplantation at this time' . PAG explained that this outcome 'did not mean that most informed Canadians were absolutely opposed to xenotransplantation. However, they favoured a precautionary approach' . The report also identified a number of critical issues yet to be resolved including potential health risks, lack of pre-clinical knowledge, unexplored alternatives therapies and the inadequacy of existing regulations to govern xenotransplantation clinical trials . The Canadian government has yet to issue an official policy on xenotransplantation . At the same time, Health Canada has revised and up-dated its standards on clinical xenotransplantation. 9 Einsiedel et al suggested that the delay in updating the standards could be interpreted as the adoption of a 'de facto moratorium' . The Canadian Standards on xenotransplantation is consistent with international guidelines including the WHA Resolution 57.18. The Canadian national inquiry was initiated because a scientist had indicated his intentions to submit an application to conduct a clinical trial involving the use of porcine cells. Thus far, no such trials have taken place in Canada . The Canadian public consultation on xenotransplantation was a novel social experiments in community engagement on a complex technoscience. Einsiedel et al noted that it was the first 'extensive deliberative consultation' undertaken by Health Canada . From their interviews with members of the Canadian public service, Jones and Einsiedel found that the xenotransplantation consultation contributed to learning about public engagement at Health Canada. While the routine of closed, expertdriven regulatory practices was destabilised, Health Canada has gone on to develop in-house infrastructure and expertise for public engagement . In this regard, the xenotransplantation controversy has enhanced openness and transparency in Canadian health care administration. Though the xenotransplantation consultation was welcomed as a positive development by social scientists, a contrary response was presented by one biomedical scientist. James R Wright expressed his discontent with the PAG consultation in papers published in three prominent biomedical journals: Transplantation, Xenotransplantation and the Canadian Medical Association Journal ). Wright Jr described himself as 'a xenotransplantation researcher' and a member of the Canadian Xenotransplantation Expert Working Group . He identified what he considered to be three serious problems with the Canadian public consultation. Firstly, PAG failed to distinguish between different types of xenotransplantation carrying 'different levels of associated public health and personal risks' . Wright Jr argued that a tailored policy response was preferable to a blanket prohibition of all xenotransplantation clinical trials. While he acknowledged that whole organ xenotransplantation was premature, he supported clinical experimentation on cellular therapies for diabetics and patients with Parkinson's diseases; and 'ex vivo perfusion of transgenic pig liver' for patients with terminal liver failure and without a liver donor . Secondly, Wright claimed that there were defects and anomalies in the procedures and processes adopted by PAG. He argued that the overarching question was too vague and considerable variability in the outcomes from citizen forums suggested the influence of experts in the deliberations . He queried the suitability of some experts appointed to makes presentations to the citizen juries ). In addition, he was highly critical of the lack of information provided to forum participants about the Canadian standards: Personally I find the fifth recommendation bothersome, "that stringent … regulations be developed to cover all aspects of xenotransplantation clinical trials," because this regulatory framework already exists. Why did the Public Advisory Group not summarize the Proposed Canadian Standard in layperson terms and then present this? … Considering that 35 % of the "no" votes were qualified and that one of the major concerns expressed by the public concerned the development of appropriate regulations, how can the results of this expensive exercise be valid when this key information was withheld? Surely the whole object of the exercise was to educate the panellists before asking them to vote? . In a subsequent paper, Wright speculated on a possible reason for the exclusion of the Canadian standards in the provision of information to forum participants. The standards could be taken to imply that a decision to proceed had been made and the organisers where 'attempting to keep the exercise nondirective' ). Thirdly, Wright Jr asserted that the 'severely flawed process [in the public consultation was] compounded by over-interpretation of data' . In his view, 19 % of citizen panelists who voted a 'qualified no' -that is, 'no, not now but possibly in the future'could be reinterpreted as 'not yet' . Combing the 'not yet' with the 'qualified yes' that is, yes with conditionsgives a total of 65 % of participants supporting xenotransplantation. Based on this analysis of the data, Wright Jr argued that 'approximately two-thirds of 'meaningfully' informed Canadians support xenotransplantation as a possible future treatment, but only if its safety and efficacy can be demonstrated' . Wright decried the separation of the 'qualified yes' and 'qualified no' as 'blatantly invalid' ). However, the above argument posed by Wright Jr is not entirely new. It was raised in relation to an earlier discussion on the results from an Australian survey on patient attitudes towards xenotransplantation. In that instance, Mohacsi et al responded to their critics from the sciences by reminding readers that 'the data are not in dispute, merely their interpretation . The exchange between Wright and social scientists over public opinion data has been aptly described as 'a war over publics' . In addition to the above criticisms, Wright also affirmed his support for public consultation. He summarised what he considered to be problematic about the Canadian response as follows: Where the Canadian Public Health Association went wrong was in its attempt to design the consultation, analyze the results and make recommendations entirely at "arm's length." None of the authors were personally knowledgeable about xenotransplantation; thus, members missed flaws in the process and interpretation that were readily apparent to someone knowledgeable about the field [Wright 2002]. At no point was there any opportunity for feedback. In stark contrast, the Expert Working Group's Standard went through 14 drafts over approximately 3 years before its official release ). He concluded that whether clinical trials should proceed is a decision for experts rather than the public. In his view, the public 'can only decide whether this is a form of therapy they would potentially like to have available at some point in the future' . Bach and Ivinson responded by arguing that public engagement should not be equated with a referendum. The challenge is to find ways of incorporating the 'public's voice' into the processes of constructing public policy . Though Wright agreed with the response made by Bach and Ivinson, he also reiterated the accuracy of his interpretation of the data: 'I believe that the Canadian Consultation was useful and that a correct analysis shows considerable support for the concept' ). The Australian xenotransplantation inquiry commenced not long after the Canadian public consultation concluded. As we will see below, Wright's comments influenced some aspects of the approach and design of the Australian inquiry. --- The Xenotransplantation controversy in Australia On 16th March 2000, journalist Deborah Smith wrote an article in the Sydney Morning Herald titled, 'Pig-tissue Transplant given the Green Light' . Her article focused on a local study led by Bernie Tuch, Professor of Medicine at the University of New South Wales . Tuch and his colleagues were based at the Prince of Wales Hospital in Sydney. They had obtained approval from the ethics committe of the South-Eastern Sydney Area Health Service to conduct a small pilot study involving the use of pig islets to treat diabetes. The cells were obtained from 'a special herd of pigs' screened to ensure that their cells were free of pathogens . Tuch and his colleagues had demonstrated that pig cells could normalise blood glucose in diabetic pigs. Two days later, however, Smith provided an update on the study as an unfolding controversy. Ron Pirola, Chairman of the SESAHS ethics committee, disclosed that his committee 'spent years deliberating' over the UNSW application . He noted that NHMRC had been notified through-out the process of ethics review and that a risk management strategy was adopted to closely monitor patients once the trials began. Bernadette Tobin, Director of the John Plunkett Centre for Ethics in Health Care in Sydney, and a member of the Australian Health Ethics Committee , called into question the safety and efficacy of the trial. She argued that research ethics was 'a matter of significance to the community and not just to the people who will benefit from the research' . Similarly, local and overseas virologists warned of the risk of cross-species infection. Peter Collignon, an infectious disease physician at the Canberra Hospital, commented, 'Theoretically, there is a major public health risk.' He proposed that 'the trial should be halted, at least until Australia has national safety guidelines on animal tissue transplants in place' . By mid-August 2000, the UNSW study was suspended . NHMRC referred the matter to one of its expert committees, the Gene and Related Therapies Research Advisory Panel . Aside from providing advice on clinical trials involving gene therapy, the role of GTRAP was expanded in 1999 to include xenotransplantation. Two experts in xenotransplantation and one expert in infectious disease were appointed to the GTRAP panel . The chair of GTRAP was Ron Trent, Professor of Medicine at the University of Sydney. Trent informed the media that he was liaising with Tuch and that the study was suspended after he conducted discussions with the SEAHS Ethics Committee. He stated, 'the concerns were that the safety issues had not been discussed. The safety issues are still not totally clear. At the moment, the study is on hold' . The decision by NHMRC to intervene coincided with a decision to terminate a xenotransplantation program conducted in Edinburgh. On 13th August 2000, the Scottish media reported that Geron Bio-Med Ltd had halted funding on genetically-modified pig experiments, carried out at the Roslin Institute. Their decision was motivated by concerns over potential retroviral infection . Shortly thereafter, the risk of PERV infection was underscored by results from a mice study published in Nature. The editors reported that researchers at the Scripps Research Institute in California demonstrated that 'transplanting pig pancreatic islets into immunosuppressed mice leads to widespread infection with PERV' . In the following month, Trent made another public statement to clarify the status of the UNSW xenotransplantation study. The study was to remain on hold until after a national public consultation. Trent informed journalists that AHEC was due to discuss the matter. ' Australians would get a say on animal-to-human transplants before any trials were allowed, ' he announced . Public consultation would take place as GTRAP prepared draft guidelines for xenotransplantation research. Trent stated, this parallel process has been forced on us because basically there was going to be a study conducted. We wouldn't like to say a trial goes ahead until we knew AHEC were happy about it, and AHEC has to make sure that the community is happy with all of this . On the same day, Tuch reported on results from a 3 month mice study concerning PERV infection. In an interview with a journalist, he remarked, 'what we've found is that when insulin-producing pig cells are transplanted into mice which have no immune system, then pig retroviruses are transmitted-but there's no infection' . However, he also conceded that additional biosafety studies was necessary. In a document subsequently published by the NHMRC, it appears that GTRAP reviewed the proposed UNSW study and recommended that it not proceed. The reasons provided included 'lack of evidence of benefit to the patient, unquantifiable potential community risk and concerns about the biological safety of the source material' . In addition, NHMRC also required therapeutic trials in non-human primates before human clinical trials could proceed. By December 2000, NHMRC had completed the necessary administration to set up the Xenotransplantation Working Party . The establishment of the XWP was initiated by AHEC and the Research Committee. The Working Party held its first meeting in early 2001. The seven members of the XWP were drawn from the NHMRC Council and its various committees including AHEC, GTRAP, the Research Committee, the Animal Welfare Committee and the Consumer Health Forum . 10 The Terms of Reference instructed the XWP, to provide advice on the scientific, ethical and technical issues relating to xenotransplantation research, produce guidelines for the assessment of animal-to-human transplantation trial proposals, and consult widely with the community about these issues . By contrast to the Canadian response, public consultation was not separated from the process of drafting and reviewing guidelines for xenotransplantation clinical trials. Kerry Breen, the initial Chairperson of the Working Party, compared the consultation process to 'the public being informed of the risks and signing a communal consent form' . Breen's colleague on the XWP, Bernadette Tobin, queried whether obtaining public consensus was possible. She observed that 'there were a number of "pretty formidable" ethical concerns in allowing future trials to go ahead' . Anthony D' Apice, the then Director of Immunology Research at St Vincent's Hospital in Melbourne and then Vice President of the IXA, welcomed the public consultation. 'These things are good for us, ' he remarked. 'One certain way of killing this science in its infancy would be to have a disaster' . The XWP conducted two rounds of public consultations in 2002 and 2004. Before undertaking the first round of consultation, the Working Party published a document titled, Draft Guidelines and Discussion Paper on Xenotransplantation, in July 2002. The stated aim of the discussion paper was the provision of information on xenotransplantation to facilitate 'an open and frank debate' . In its draft guidelines, the XWP proposed a list of criteria or principles which had to be met before a xenotransplantation clinical trial could proceed. The proposed research must 'serve the common good'; 'justify any risks'; 'be scientifically sound' and 'therapeutic in design'; protect the 'safety and rights of close contacts'; ensure long-term monitoring of participants; and facilitate 'adequately informed and voluntary consent' . The Working Party conducted the initial consultation by inviting written submissions and hosting meetings in four capital cities. The XWP received 97 written submissions. A total of 65 participants attended the public meetings held in Sydney, Melbourne and Perth. Two 'targeted meetings' were held in Perth and Adelaide with a total of 51 invited participants . While a few respondents supported the XWP draft guidelines, the majority of respondents stated that they were opposed to animal-to-human transplantation . 11 The main counter-arguments included 'the risk of infection for the transplant recipient and the entire community; the violation of animal rights; that funds and other resources could be better directed elsewhere; and doubts about the likelihood of patients benefiting' . Lawrence Pope, President of the Victorian Animal Welfare Association, made scathing comments in the media. 'It's an appalling abuse of animals, ' he said. 'It's the 21 st century and most members of the public want our governments and brightest minds to assist animals, not come up with new ways to torment and torture them' . In an interview with a journalist, Peter Collignon, noted that the draft guidelines were issued on the presumption that xenotransplantation was acceptable notwithstanding its public health risks. Similarly to Bach, he emphasized the importance of public consultation: 'There has to be very strong community discussion and agreement as to whether you do the process at all' . Unlike the Canadian consultation, the question posed to the Australian public was not 'should xenotransplantation proceed and, if so, how?' Rather, they were only offered an opportunity to comment on 'how should Australia proceed [with xenotransplantation]?' . Written and oral responses from individuals and organisations feed back into the design of the second round of public consultation. The XWP acknowledged 'the submissions and discussion at the public meetings raised many significant concerns and identified issues that were not fully covered by the Discussion Paper or were in need of further consideration and discussion' . The XWP reported that there were two shortcomings in the initial consultation: many participants only considered solid organ xenotransplantation, and participants did not represent 'all interest groups' . They noted that there were few submissions from transplant recipients and patients who may benefit from xenogeneic therapies . As such, for the second consultation, the XWP engaged the services of a public relations company to promote community engagement and increase public participation. The XWP was also expanded to include new members with expertise in animal welfare, clinical trials regulation and the management of infectious diseases . An Animal Issues Sub-Committee was formed to address the issue of animal ethics, animal welfare and the use of animals in experimental transplantation . The Terms of Reference for the XWP was redrafted with minor modifications . A separate Terms of Reference was prepared for the AIS . In early 2004, the XWP and AIS issued two documents to undertake the second round of national consultation. A plain English guide on xenotransplantation was prepared to provide accessible information for the general public . The XWP set out its responses to the initial consultation in a second discussion paper . Though the Working Partying acknowledged that xenotransplantation was highly contested, it concluded that 'there are no significant in-principle ethical objections to the use of live organs and tissues from animals for human therapies, that would preclude any further research to develop such therapies' . It reiterated a position it adopted in the previous consultation. That is, xenotransplantation clinical trials should be allowed to proceed 'if there are clear potential benefits, both for individual patients and for the general public' . The draft guidelines were revised to incorporate two new topics: animal welfare and patient selection. The additional guidelines required research protocols to specify clear information on the criteria for patient selection . Further, in accordance with the relevant regulations, all pre-clinical and clinical xenotransplantation studies are required to meet rigorous animal welfare standards . Similarly to the initial consultation, the second round of consultation involved public meetings and a call for written submissions. In February 2004, the XWP held public meetings in all capital cities around the country attracting a total of 377 attendees. On this occasion, there were no targeted meetings. After the second round of meetings, Jack Sparrow, the second Chairperson of the XWP, made general comments on public responses in an interview on national radio. Sparrow reported that transplant recipients and patients on waiting lists, and their families supported xenotransplantation . However, he also added that ' Australians are more fearful about the use of living animal material in humans than they were 18 months ago as a result of the severe acute respiratory syndrome and bird flu outbreaks overseas' . The Working Party received a total of 343 written submissions from respondents in Australia and overseas . From its public consultation, the XWP found that 'animal-to-human transplantation, in particular animal organ transplantation, is not acceptable to many people' . Interest groups added to the debate by publishing contradictory outcomes from two separate public opinion surveys conducted in 2004. A poll commissioned by Pfizer Australia and Transplant Australia 12 found that 70 % of respondents would accept an organ from an animal in 'a life-or-death situation' . This study surveyed 1500 people from all states and territories . On the other hand, the Australian Association for Humane Research presented a contrary perspective based on the outcomes of a Newspoll survey they commissioned. Newspoll interviewed 1200 adults in late May 2004. The survey revealed that only 5 % of interviewees knew what xenotransplantation was and 31 % did not think that the process should be approved for clinical trials . AAHR reported that the three most common reasons for opposing xenotransplantation included 'the belief that it is unethical … that humans and animals are too different … and that it is dangerous to human health' . Given the lack of public awareness about xenotransplanation, AAHR concluded that the education campaign conducted by XWP was ineffective and the approval of xenotransplantation clinical trials would place 'the Australian public at risk without their knowledge and informed consent' . By September 2004, the XWP submitted their Final Report and proposed Clinical Guidelines for Animal-to-Human Transplantation Research to the NHMRC Council. Council examined and debated the content of these documents over two meetings. Initially, the XWP had opposed a moratorium on all types of animal-to-human clinical trials including solid xenotransplants . However, by the end of the Inquiry, the XWP modified its policy. In its Final Report, the XWP advised that, … AOT [animal organ transplants] trials should not be considered for at least the next 5 years, on the basis that theoretical concerns suggest that this type of transplant carries the greatest risk of infection, current evidence indicates that this risk is not outweighed by likely prospects of success, and there is a high level of public concern about animal welfare for the animals involved in this type of research . At its 154th session, the NHMRC Council adopted two recommendations proposed by the Working Party. On 20th September 2004, it issued a communique announcing that there would be a 5 year ban on whole organ animal-to-human transplantation; and the use of non-human primates as a source animal for clinical transplantation . The latter policy is consistent with a recommendation proposed in the Nuffield Council report . The NHMRC Council explained that it had reached its decision by taking into account 'community concerns raised during two rounds of national consultation, including fear of new infectious diseases transferring from animals to humans and ethical and social concerns about the use and welfare of animals' . At its 155 th session, the NHMRC Council declined to endorse the Final Report and Draft Guidelines. The XWP proposed the establishment of a national committee to oversee research on animal cell therapies and animal external therapies, comparable to UKIXRA . They also recommended that cellular and external xenogeneic therapies should be given an 'extremely cautious "green light" if such trials were strictly regulated in Australia.' However, in response to both proposals, Council decided otherwise. In its subsequent Communique, Council declared that 'there should be no clinical trials in Australia using animal cellular therapies or animal therapies for 5 years' .' In a follow-up media release issued on 10th March 2005, the NHMRC Council explained that its decision to ban all forms of xenotransplantation was made on the basis that the 'risks of transmission of animal viruses to transplant recipients and the wider community had not been adequately resolved. In addition, xenotransplantation research was at an early stage and clinical trials in the foreseeable future were unlikely to be of significant benefit to research participants' . The only exception to the moratorium appeared to be the established practice of culturing human skin tissue on 'feeder layers of irradiated mouse cells' to treat burn patients . Council also instructed GTRAP to monitor developments in the field and provide updates to Council. It stated that it would reconsider its position if new information became available . On the direction of Council, the final report and draft guidelines were made public as 'not endorsed' documents. 13 The Australian xenotransplantation moratorium was implemented from 2005 to 2009. Towards the end stages of the moratorium, the NHMRC Council revisited the issue to consider the future direction of xenotransplantation research in Australia. A media release was issued on the 10 th December 2009. Michael Good, Chairperson of the NHMRC Council, stated, ' After careful consideration, the Council is of the view that, although there is a wide range of community views on the topic, xenotransplantation research was acceptable in Australia when there are robust regulations in place' . NHMRC indicated that it would develop guidance documents for researchers and ethics committees based on advice from AHEC and the Animal Welfare Committee. The announcement was welcomed by researchers and JDRF . Living Cell Technology Ltd , a private research company based in New Zealand, immediately issued a media release expressing its intentions to expand its xenotransplantation clinical trials into Australia . At the time, LCT had just resumed it xenotransplantation clinical trials in New Zealand. The New Zealand moratorium on clinical xenotransplantation was lifted in December 2006. Whereas public consultation was a key aspect of the Australian national inquiry on xenotransplantation, the decision to lift the moratorium did not involve any input from the Australia public. As such, this decision has been called into question by its critics. AAHR issued a media release to call for a public debate. It maintains that a 'community decision' is necessary since 'it will be the general public that will pay the ultimate penalty for any fallout' . Sociologist, Peta Cook, noted that 'all forms of ctXTP [clinical xenotransplantation] are now theoretically possible in Australia ' . She argued that the public was marginalised and their diverse knowledge devalued because the public consultation conducted by the XWP did not facilitate 'meaningful public engagement' . At the same time, however, she also acknowledged that public input had a bearing on government decision-making. Cook wrote, this decision [ie placing a 5-year moratorium on all forms of clinical xenotransplantation] was informed by community concerns and the scientific uncertainty surround zoonosis … and social anxieties regarding animal welfare and use … this outcome suggests that the NHMRC respects the community and the issues that they raised, the lifting of the moratorium on 10 December 2009 suggests otherwise' . The Final Report of the XWP proposed a review of its recommendations and guidelines after a 5 year period. Specifically, it prescribed that this 'review must include public consultation' . However, to the extent that the report was 'not endorsed, ' the status of its long term directions is ambiguous. The recent NHMRC decision to permit clinical xenotransplatantation aligns with policies in Canada, New Zealand, United States and the European Union. The Australian guidelines for such research do not appear to be available on-line. On its webpage on xenotransplantation research, the NHMRC stated that, it 'has issued, using advice from its Australian Health Ethics Committee and Animal Welfare Committee, guidance for researchers and ethics committees involved in animal to human studies.' However, the only documents on this webpage are 'archived publications' made available for 'historical purposes only.' 14 In support of its decision to lift the national ban, the NHMRC published a peer-reviewed discussion paper titled, Xenotransplantation: A Review of the Parameters, Risks andBenefits, in 2009 . This paper was based on an expert consultation involving NHMRC staff and invited guests. On 8th August 2008, the NHMRC held a workshop at its Head Office in Canberra to review xenotransplantation research in Australia. The workshop was attended by experts from Australia, New Zealand, Europe and the US . Though the Australian moratorium was not intended to impede pre-clinical xenotransplantation research, the Discussion Paper noted some unanticipated adverse consequences. The moratorium delayed the development of regulatory guidelines and research infrastructure such as the building of 'containment facilities for source pigs' . The discussion paper concluded, … the consensus is that the risk posed by animal viruses is low and can be managed via herd selection and screening strategies provided there is a regulatory mechanism to obligate compliance. In reality, the risks of novel infection is more likely to be greater with allotransplantation compared with xenotransplantation as human donors are not screened or held in specialised containment facilities . In other words, pig husbandry allows for routine testing of known pathogens which are not conducted on human organ donors. As such, NHMRC argued that 'xenografts may be safer than allografts' . The discussion paper also mentioned that 'xenogeneic tissue … appear to be relatively resistant to infection by some of the human pathogens commonly complicating allotransplantation including HIV and the hepatitis viruses' . Moreover, xenotransplantation was presented as a potentially superior therapy with numerous advantages over allotransplantation including 'virtually unlimited' supply of tissue, flexible timing of transplant procedure, and limited or no requirement for immunosuppression . The NHMRC discussion paper, however, omitted a critical discussion on the limitations of preclinical screening of source pigs. This matter had already been raised two decades ago. In 1995, referencing comments by virologist, Jonathan Allan, Hanson wrote, 'tests cannot screen for the unknown, and that monitoring [of patients and source pigs] can only tell where an epidemic originated' . Alternatively put, screening can only prevent an outbreak of contagion where an effective test for a known disease agent has been developed and incorporated into routine surveillance procedures. The shortcomings of existing risks management strategies have already been demonstrated in allotransplantation. To further elaborate on the limitations of current screening practices, I will now turn to consider some incidences involving experimental and routine allograft in the final part of this paper. --- Islet Allotransplantation and the other moratorium As the public debate over xenotransplantation took place in different parts of the world, scientists achieved significant progress in their research on the transplantation of human islet cells. In 2000, James Shapiro and colleagues reinvigorated the field of islet transplantation when they announced positive results from their study involving seven type 1 diabetes patients. Shapiro is Professor of Surgery, Medicine and Surgical Oncology and the Director of the Clinical Islet Transplant Program at the University of Alberta. Subsequently called the 'Edmonton Protocol' , his approach introduced a steroid-free immunosuppression regime coupled with the implantation of a large number of islets from multiple donors . This protocol attracted worldwide interest transforming islet transplantation into a viable clinical procedure. Chisholm et al summarised the key findings from the Edmonton study as follows: Independence from insulin injections was initially achieved in about 80 % of patients at 1 year post-transplant and significant reduction in hypoglycaemia unawareness. Five years after islet transplantation … the majority of patients have c-peptide present, indicating insulin production, but only a minority maintain insulin independence. Those who resumed insulin therapy required half of their pre-transplant insulin dose. Hypoglycaemic score improved significantly post-transplant, and was maintained over 5 years. Fifty percent of patients demonstrated stabilisation or improvement of their diabetic neuropathy. A recent long term follow up has confirmed that transplant recipients also report a significantly increased quality of life . As discussed in Part I, islet allograft is generally restricted to patients with brittle or severe diabetes. Patients seeking such treatment need to demonstrate poor quality of life and that they are at risk of health complications exceeding the dangers associated with islet transplantation. Due to the outcomes of the Edmonton study, the field of islet transplantation attracted considerable public and private money. The first major initiative was the Immune Tolerance Network funded by JDRF International, the National Institute of Diabetes and Digestive and Kidney Diseases , the National Institute of Allergy and Infectious Diseases . The program received US$144 million to begin its research activities in mid-2000. The aim of the ITN is the development of new immune tolerance therapies. In July 2000, US President Bill Clinton launched the first international multi-centre study funded under the ITN. The study involved nine research centres located in the US, Canada and Europe. Robert Goldstein, Chief Scientific Officer of the JDRF commented, 'The ITN is an intellectual powerhouse. It is exciting to see so many world-leaders working together with a single goal in mind' . Four years later at the 64 th Annual Meeting of the American Diabetes Association in Florida, Shapiro announced the outcomes of the ITN study. He reported that approximately half of the cohort continued to be insulin-independent for up to 1 year post-transplant . These positive results offered encouragement for researchers to continue their investigations. Following the ITN multi-centre study, the NIDDK and NIAID established the Clinical Islet Transplantation Consortium in 2004. The CITC comprised of a network of 13 research centres from the US, Canada, Norway and Sweden. It was a 5 year program with an allocation of US $75 million . The studies conducted by the Consortium aimed to improve the safety and long-term function of islet grafts. 15 As a consequence of intensive research activities, researchers have been able to significantly improve the efficacy of islet transplantation. The Schulze Diabetes Institute at the University of Minnesota obtained one of the best clinical outcomes. They reported, all transplant recipients were protected from hypoglycemia immediately after the transplant, 80 % remained protected from severe hypoglycemia for 5 years post-transplant, 90 % have become insulin independent, and more than 50 % have maintained insulin independence for 5 years post-transplant . The multi-year, multi-centre clinical trials conducted by CITC completed in Spring 2014. The outcomes of the trails began to be reported in peer-review journals in 2014 . Based on those results, US researchers are now in the process of seeking approval from the FDA to provide islet transplants as a clinical therapy. It is anticipated that approval may be forthcoming in the near future. In Though islet transplantation has rapidly developed over the past decade, it was temporarily halted for a period due to concerns about possible contamination of pancreatic islets. In March 2007, researchers became aware that the enzyme used to extract islet cells was produced with a solution containing tissue from 'cow brains' . The enzyme was manufactured in the US by Roche Applied Science. Canadian journalist, Jodie Sinnema, reported that a Roche supplier used fat tissue from cow brains to enhance the growth of bacteria producing the enzyme. At the time, bovine spongiform encephalopathy had been identified in the US and there were a small number of reported cases of Creutzfeldt-Jakob disease . Commonly known as brain-wasting disease, CJD is an incurable and fatal neuro-degenerative disorder. Variant CJD , one type of neurological condition, is caused by the consumption of beef products infected with BSE or mad cow disease. The materiality of the risk of contamination was underscored by the prior incidences of patient death due to various medical procedures. Since the late 1960s, patients have contracted CJD following corneal graft, dura mater transplant, 16 and the administration of humanderived pituitary growth hormones . The risk of CJD associated with the use of Roche enzyme was identified by the National Institute of Health . They conveyed the news to Shapiro. The NIH made the discovery during the process of establishing an islet transplant program in the US . 'Why didn't we know about this before the 22 nd of March? I can't truly answer that question' , Shapiro conceded . He noted that the information pamphlets for the enzyme did not mention 'cow brains.' However, a representative from Roche countered that their catalogue indicates that the product is only designed for the use of research and mentions the use of animal products even though it did not specify the particular type of tissue in question . Given the risks of infectious diseases, JDRF International issued a global moratorium on the use of Roche enzyme for experimental islet transplantation . In the following month, Shapiro informed the local media that he had notified all his patients about possible contamination and the remote risk of CJD. Health Canada estimated the risk to be 'between 1 in one million and 1 in 10 million' . Counselling was also provided to islet recipients in other parts of the world. Up until then, about 600 patients had received islet transplants worldwide including almost 100 patients at the Clinical Islet Transplant Program at the University of Alberta . In Australia, six patients had undergone islet transplantation at Westmead Hospital . No cases of infection have thus far been identified. Shapiro announced that his program would be placed on hold until they could procure a suitable alternative enzyme as well as the necessary approval from relevant government authorities. Neil Cashman, clinical neurologist and neuroscientist from the University of British Columbia, expressed strong criticisms about the technical mishap. Products made out of cattle brain, it's medieval. I find it distressing that there are still products like this that Dr Shapiro would use in his protocols without even knowing about it. The diabetes program at U of A is world-renowned. To find out at this stage that the enzyme is grown in bacteria that are exposed to cow brain is really distressing . The use of bovine tissue in the production of the Roche digestive enzyme demonstrates the ways in which animal material is deeply embedded in contemporary systems of manufacture and production. In the context of biomedical research, our dependency on animal bodies is taken for granted and overlooked, even by leading experts working in the field. The JDRF moratorium coincided with the mid-point of the Australian moratorium on animal-to-human transplantation. Ironically, the pre-cautionary ban on xenotransplantation offered protection against the risks of infectious diseases in a way which was not available to the early recipients of experimental islet allografts. It clearly indicates the need for vigilance whether scientists are experimenting with biological materials sourced from animals or human donors. Without a safe digest enzyme, the Australian Islet Transplantation program was delayed by 'many months' . Of course, full compliance with the JDRF moratorium was not unreasonable. At the time, the Australian transplantation community had just encountered an incident of zoonosis which resulted in the deaths of three transplant recipients. The ill-fated transplants took place towards the end of 2006 at two metropolitan hospitals, the Royal Melbourne Hospital and the Austin Hospital in Heidelberg, Victoria. Seven years later, a Victorian Coroner issued her report into the cause of patient deaths in May 2013 . The transplant donor had travelled to Serbia for 3 months where he visited his mother and resided at a rural property. Upon his return to Australia, the patient became ill experiencing considerable weight loss. He died of a brain haemorrhage in early December 2006. Experts speculated that the donor may have contracted a virus while abroad . They identified the agent as a novel virus comparable to an arenavirus known as lymphocytic choriomeningitis virus . Since 2003, LCMV has been linked to several clusters of patient deaths following transplantation in four states in the US . This virus is contracted through exposure to rodents including rats, mice and hamsters. LCMV infection generally causes mild flu-like symptoms in immunocompetent patients. However, in the case of immunosuppressed patients, it may result in serious symptoms such as encephalitis, an acute inflammation of the brain. Following the death of the donor, his liver and kidneys were retrieved and transplanted into three female patients in December 2006. The infected organs resulted in human-to-human transmission of the 'LCMV-like virus'. The first patient death occurred on New Year's Day, 2007. The remaining two deaths took place by the end of the week. Currently, universal testing of organ donors for arenavirus does not form part of standard practices in transplantation . According to a medical epidemiologist from the US Centers for Disease Control and Prevention, the only available diagnostic test for arenavirus is not widely available and may take up to a week to perform . The Victorian Coroner found that the LCMV-like virus was the underlying cause of the deaths of all three organ recipients. She concluded that the screening process adopted for organ retrieval was 'reasonable and appropriate in the circumstances and of itself could not have added any additional information that was likely to have altered the outcome' . The coroner's findings were based in part on submissions made by surgeons involved in organ procurement and transplantation. Professor Robert Jones, Director of the Liver Transplant Unit at the Austin Hospital submitted: This particular liver … from our donor in Dandenong was in fact a very good organ and it worked very well and so there was certainly no concern … we would have to feel there was a significant risk in the donor before we would turn the donor down. As I say, every donor we accept we're accepting risks that this organ may not work or it may transmit disease or it may cause other problems and we're weighing that against a recipient who may die otherwise' . Given these comments, it is clear that organ transplantation involve an appraisal of the costs and benefits whereby access to the technology of transplantation is conditional on a marginal though potentially serious risk of disease. There are no possible safeguards against unknown diseases. Neither are there safeguards where an effective test for known diseases has yet to be designed and implemented in the screening procedure. In addition to the cases of LCMV and LCMV-like arenavirus, other infections found in organ recipients include parasites, rabies, HIV, West Nile virus, Chagas' disease, herpes simplex virus and hepatitis B and hepatitis C viruses . Thus, similarly to the practice of xenotransplantation, patients seeking an organ transplant bear the risk of contracting an infectious disease which cannot be identified through the existing screening processes. Moreover, the incidence has catalysed a debate as to whether Australia should introduce a policy to inform patients of the variability of organ quality . The surviving partner of one of the deceased patients remarked that she and her partner would have thought twice about the transplant operation if they were aware that the donated kidney was 'borderline' . --- Conclusion Experimental islet transplantation has a long history in both Canada and Australia. It is highly likely that the transplantation of a partial human pancreas, performed by Sir John Ramsay in Tasmania in 1911, was the first allograft of its kind in the world. Similarly, as noted above, Frederick Banting attempted canine tissue transplantation following his successful research on insulin. More recently, aside from the continuation of scientific research in both countries, Canada and Australia have also been the subject of social science investigations for its national responses on xenotransplantation. Due to the anticipation of xenotransplantation clinical trials by Canadian and Australian researchers, both jurisdictions responded with initiatives to engage the public in policy decision-making. For both countries, the outcome was a mix of the local and global as well as a fusion of technical expertise and lay perspectives concerning human experimentation and the use of animal bodies for biomedical experimentation. Towards the end of 1997, Canada began to 'systematically' undertake a national public consultation on xenotransplantation to address public health risks and the associated 'socio-ethical, legal and scientific challenges' . Canadian scholars, Einsiedel and Ross argued that the process of public consultation substantively contributed to the Canadian debate on xenotransplantation in two ways: firstly, it facilitated the 'pluralisation of knowledge' by allowing marginalised voices to be heard; and secondly, it offered the public an opportunity to consider the risks and benefits of a technology with experts . Following a national public consultation, Canada effectively prioritised the role of the public by delaying the introduction of its standards for clinical xenotransplantation. Another defining aspect of the Canadian response is the absence of an official national policy on xenotransplantation. Einsiedel et al suggested the lack of an articulated policy could be read as in itself a 'decision' . Though a non-decision is highly ambiguous, it may also be the only workable or realistic position to adopt given that the field is constrained by uncertainty regarding the risks of infectious diseases. The introduction of the Canadian xenotransplantation standards has been criticised for undermining public health concerns and inconsistency with the principal recommendation from the national consultation . However, in the absence of an explicit policy commitment to a moratorium with a fixed duration, it could be argued that the Canadian approach was sufficiently pliable to accommodate competing national priorities for public safety and the promotion of biotechnological innovation. Xenotransplantation has been less of a contested political issue in Canada than in the US and UK where opponents have contested the research in the law courts . In addition, the Canadian public engagement on xenotransplantation also facilitated institutional learning about the role of the public and public participation in policymaking within Health Canada . By contrast to the Canadian response, Australian policy on xenotransplantation was made and remade by the federal agency governing medical research, the NHMRC. Australian scientists are among the most active researchers in transplantation medicine. They also participate in the development of global and local regulatory standards for clinical xenotransplantation. The Australian national inquiry on xenotransplantation took place after comparable inquiries were completed in other jurisdictions. As such, it was in a position to draw upon and learn from the experiences of other countries including Canada. In 2009, the NHMRC shifted from a precautionary approach to permissive regulation of xenotransplantation consistent with policies adopted in other developed countries including Canada, New Zealand, United States and the European Union. Though the NHMRC has indicated that it has issued guidelines for 'animal to human studies, ' this document do not appear to be available on their website. Within a consensual model of decision-making, Australian efforts to engage in experimental democracy appear to become un-done when competing national priorities for scientific innovation took precedence in 2009. As noted above, there are conflicting views as to whether or not public consultation was necessary or required before the lifting of the national ban . A subsequent public consultation did not take place in Canada. However, unlike Canadian social science research, no comparable empirical research has been conducted to assess whether or not there has been institutional learning regarding the importance of public participation in the development of health and research policy at the NHMRC. Public controversies over islet allograft and xenograft render visible the ambiguity of our taken for granted boundaries concerning species difference, knowledge production, and risk management in transplantation surgery and experimentation. As note above, the Australian ban on clinical xenotransplantation coincided with the JDRF moratorium on islet allotransplantation in 2007. These incidences illustrate that the risk of infectious diseases is problematic not only in xenotransplantation but also in allotransplantation. Stringent measures are necessary to regulate both experimental and routine transplantation. Ironically, the ban on xenotransplantation clinical trials provided protection for patients in a way which was not available to transplant recipients and research participants receiving islet allografts under the Edmonton Protocol. In its 2009 report on xenotransplantation, the NHMRC omitted a discussion on the JDRF global moratorium in the context of islet allograft. Yet, allotransplantation is also an important point of comparison for its analysis of xenotransplantation. As noted above, the NHMRC paper articulated the claim that 'xenograft may be safer than allograft' . In its support of clinical xenotransplantation, NHMRC advocated the practice of screening source pigs and monitoring for infectious diseases without addressing the limitations of such procedures. Due to the possibility of human error, a rigorous and robust approach on the regulation of clinical xenotransplantation would also need to take account of potential accidents and inadvertence. British biochemist and Nobel laureate, Richard Roberts, made the obvious point succinctly, 'Humans are human. People make mistakes' . With the expiry of the xenotransplantation moratorium in Canada, Australia and elsewhere, it remains to be seen how clinical research in this field will unfold and whether developments in virology will have a bearing on the future trajectory of experimental transplantation as has been the case in the past. --- Endnotes 1 Examples of internal therapies include cellular and whole organ xenotransplantation. External therapies refer to exposure of the human body or bodily fluids to animal biological material such as the use of pig skin to treat severe burns and extracorporeal perfusion of transgenic pig livers for patients with liver failure. 2 Emerita Professor, Barbara Adam, coined the term 'timescape' to highlight the importance of studying temporality and the temporal order. She explained her concept by drawing an analogy with other types of 'scapes' , underscoring the significance of spatiality and materiality: '… landscapes, cityscapes and seascapes mark the spatial features of past and present activities and interactions of organisms and matter, timescapes emphasise their rhythmicities, their timings and tempos, their changes and contingencies. A timescape perspective stresses the temporal features of living. Through timescapes, contextual temporal practices become tangible.' . For the purposes of this paper, an example of changing timescapes are the periods before, during and after the imposition of a national moratorium on clinical xenotransplantation. 3 Decades later, extracts from Ramsay's paper was reproduced in a journal article written by John C H Morris in the Medical Journal of Australia . 4 Historically, surgeons used the term 'heterotransplantation' to refer to cross-species transplantation. This term was substituted with the word 'xenotransplantation' in the early 1960s . 5 The operation is a heterotopic heart transplant undertaken with the aim of removing the animal heart at a later stage should the native heart recover or a human heart becomes available . 6 Four years later, the position of the European Union shifted following a report issued by the 'Working Party on Xenotransplantation.' In June 2003, the 7 For the Inventory on Human Xenotransplantation Practice website see, <http://www.humanxenotransplant.org/home/index.php>. 8 The transcript of the debate is posted on the website of the Islet Foundation: see Islet Foundation, The Xenotransplantation Debate Continues … <http:// islet.org/32.htm>. 9 In Canada, clinical xenotransplantation can only proceed with the approval of Health Canada. Xenografts are regulated as therapeutic products under the Canadian Food and Drugs Act , the Food and Drugs Regulation and the Medical Devices Regulation. In addition, investigators are obligated to meet safety requirements set out in the Guidance Document on the Regulation of Medical Devices Manufactured from or Incorporating Viable or Non-Viable Animal Tissue or their Derivative . 10 The NHMRC Council is the principal governing body of the NHMRC. 11 The XWP analysed the written submissions by distinguishing between 'explicit statement' and 'views inferred from text.' A total of 25 submissions were in favour of animal-to-human trials . A total of 66 submission were opposed to such trials . 12 Transplant Australia is a 'national charity representing transplant recipients, donor families, living donors and all those touched by organ and tissue donation and transplantation.' For further information, see their website: <http://transplant.org.au/# > . 13 In a 2014 paper, Cook noted that the 'final recommendations of the XWP … are … no longer freely available on the internet' . I concur with her observation. It appears that the Final Report of the XWP and the NHMRC media release dated 10th March 2005 have been retracted. 14 For details, see NHMRC webpage, Animal to Human Transplantation Research <https://www.nhmrc.gov.au/health-ethics/ethical-issues/ animal-human-transplantation-research-xenotransplant-ation>. This page does not have a publication date. As of 6 August 2015, the page was last updated on 2 December 2014. 15 For the CITC website, see <http://www.citisletstudy.org/>. 16 Dura Mater is a thick membrane closest to the skull. It covers the brain and spinal cord. Dura mater is generally used when suturing is not an adequate procedure to treat damage to the brain. --- Competing interests The author declares that she has no competing interests.
This paper situates the public debate over the use of living animal organs and tissue for human therapies within the history of experimental islet transplantation. Specifically, the paper compares and contrasts the Canadian and Australian responses on xenotransplantation to consider what lessons can be learnt about the regulation of a complex and controversial biotechnology. Sobbrio and Jorqui described public engagement on xenotransplantation in these countries as 'important forms of experimental democracy.' While Canada experimented with a novel nation-wide public consultation, Australia sought public input within the context of a national inquiry. In both instances, the outcome was a temporary moratorium on all forms of clinical xenotransplantation comparable to the policies adopted in some European countries. In addition, the Australian xenotransplantation ban coincided with a temporary global ban on experimental islet allotransplantation in 2007. Through historical and comparative research, this paper investigates how public controversies over organ and tissue transplantation can inform our understanding of the mediation of interspeciality and the regulation of a highly contested technoscience. It offers an alternative perspective on the xenotransplantation controversy by exploring the ways in which coinciding moratoriums on islet allograft and xenograft challenge, complicate and confound our assumptions regarding the relationships between human and animal, between routine surgery and clinical experimentation, between biomedical science and social science, and between disease risks and material contagion.
Introduction Due to its long history of war, Afghanistan has endured extreme poverty, lack of employment, a large refugee population, extreme division of social class, inadequate educational infrastructure, horrific violence, and millions of civilian casualties since 1979. [1][2][3][4][5] While living in a war-torn country takes its toll on the entire population, the situation in Afghanistan is especially harsh on Afghan women, as they are often considered unequal to their male counterparts and in many cases are subsequently abused, denied education, health care, employment, and other basic human rights. 6,7 Denial of human rights, gender inequality, and living in a war zone have been linked with severe depression and poor social functioning. [7][8][9] Research has shown that such mental health problems are often present among female drug abusers. 10,11 Further, because Afghanistan is a major source of the global supply of opium and hashish, 12 and because opium is commonly used by Afghans for medicinal purposes, 12,13 Afghan women face a unique and significant reality in which they have easier access to illegal and psychotropic drugs than they do to drug abuse treatment, education, or health care. While studies have begun to look at this important issue by reporting prevalence of human rights violations and mental health problems among Afghan women, [6][7][8][9] this study builds on prior research by assessing the prevalence of these issues among women with serious substance use problems in drug abuse treatment centers in Afghanistan, and examining risk factors for human rights violations among this population. --- Women's human rights in Afghanistan The United Nations Universal Declaration of Human Rights states that everyone is entitled to the rights set forth in the declaration "without distinction of any kind, such as race, color, sex, language, religion, political or other opinion, national or social origin, property, birth, or other status." And, those rights include: the right to not be subjected to torture, degrading, or inhumane treatment; the right to move about freely within your own country; the right to education and work; the right to marry only with full consent of both parties; and the right to a standard of living for the health and well-being of oneself and family. 14 A UN report on the challenges of human rights and cultural diversity further states, "The right to culture is limited at the point at which it infringes on another human right. No right can be used at the expense or destruction of another, in accordance with international law." 15 The rights set forth in the UN declaration helped guide this study and were referenced when developing survey instruments in order to adequately assess the human rights violations experienced by Afghan women. The plight of Afghan women became a highly publicized international concern after the Taliban takeover, which imposed extreme gender-based restrictions on women's human rights punishable by harassment, torture, and death. Although Afghanistan has been characteristically a patriarchal society due to religious and cultural beliefs, as well as the societal structure, Taliban rule brought violent enforcement of laws which were more restrictive and oppressive than traditional life was for Afghan women. 16 Rasekh and colleagues 7 found that during this time women reported poor access or no access to health care services, occasions in which they were ill and unable to seek medical care , extreme fear when in public , and extreme restricted social activities . --- Human rights violations and mental health problems The harsh realities of living in Afghanistan, including severe gender-based inequalities and human rights violations, have been linked to serious mental health problems among Afghan women. 8,9 For instance, Rasekh and colleagues 7 reported that when Afghan women were asked about the 2 years post-Taliban occupation, most reported a decline in physical and mental health status , and a decline in access to health care . Many women reported symptoms of posttraumatic stress disorder , major depression , and significant anxiety . Amowitz et al 8 found that the majority of Afghan women in their study from Taliban controlled areas attributed their mental health problems to Taliban official policies toward women. Results showed that severe depression was far more prevalent among Afghan women exposed to Taliban policies than those living in non-Taliban controlled areas . There were also higher occurrences of suicide ideation and suicide attempts , and a higher number of those in Taliban controlled areas indicated that the Taliban contributed "quite a bit" or "extremely" to their suicide ideation or attempts . Four years after the Taliban rule officially came to an end, Cardozo et al 9 reported results which showed that Afghan women, when compared to Afghan men, were still suffering from poor mental health, including greater symptoms of depression , anxiety , posttraumatic stress disorder , and lower social functioning . Most of the sample had experienced four or more traumatic events, and the most commonly reported traumatic events for females included denial of basic human rights such as no access to health care , lack of food and water , and lack of shelter . --- The current study The results of these studies allude to the potential impact that human rights violations have on Afghan women. Although Taliban rule officially ended in late 2001, the aftermath of its influence is still present in Afghanistan. The effects of intense trauma experienced by Afghan women will subsist for far longer, especially because many of them have turned to substance use in an effort to cope with feelings of depression and hopelessness, to ease pain, and cope with repressive lifestyles. 12,13 Although documented estimates are believed to be low, in 2005 it was estimated that 2% of all Afghan women were addicted to drugs. 17 Research shows that women with a history of emotional, physical, and sexual abuse are more likely to engage in substance use as a coping mechanism. 13,18,19 Maguet and Majeed 20 posit that addiction is a direct consequence of physical and psychological violence related to conflict-affected countries. In order to better understand the challenges and problems faced by drug-addicted Afghan women, this study examines the extent to which women in DAT have experienced human rights violations and mental health problems prior to entering the DAT centers, and whether there are specific risk factors for human rights violations among these women. The current paper utilizes data from three of these DAT centers that are for women and their children only. At the time this study began, these centers were located in provinces considered to be in the "safe zone" of the country and thus least likely to have been disrupted by the ongoing war. It should be noted, however, that there have been reported conflicts in these areas within the past 2 years. The names and locations of these DAT centers are confidential. --- Study participants A total of 176 in-person interviews were conducted with female participants between 0-5 days after completing their detoxification process in the DAT centers. One-hundred seventy-two cases were used for analyses after removing four cases that provided more than one inconsistent response, which is a common quality assurance standard in large national datasets . --- Measures Human rights violations Participants responded yes or no when asked whether they had experienced 10 different human rights violations prior to entering the DAT centers. The authors developed these items, based on numerous online news reports, 21,22 the UN's Universal Declaration of Human Rights, 14,15 research articles, [6][7][8] and consultation with an expert panel of four Afghan DAT center directors. Whereas we do not claim this list is exhaustive, the expert panel felt it was representative of the types of human rights violations most commonly experienced by Afghan women. To better understand various types of human rights violations, we conducted a principal component analysis with varimax rotations on the ten items. According to Pedhazur and Schmelkin, 23 principal component analysis attempts to characterize the majority of the variability in all items with smaller groupings of items, while factor analysis attempts to group items into scales based on those items with the strongest interrelationships. Computationally, the only difference is distinguished by whether the diagonal elements in the correlation matrix analyzed are set to one or whether the communalities are used as the matrix diagonal. We examined two-, three-, and four-component solutions based on eigenvalues greater than one . We chose a three-component solution, as it was the most substantively interpretable solution and adding a fourth component resulted only in a one-item component that only accounted for an additional 11% of the variance. The first component accounted for 29% of the variance in the data and the five items were grouped together and termed Maltreatment. The scale had acceptable internal consistency reliability , and component loadings ranged between 0.83 and 0.31. The second component accounted for 18% of the variance and the three items represented activities that we termed Gender-based Inequality. This scale also had acceptable internal consistency reliability , and component loadings ranged between 0.82 and 0.78. The final component accounted for 13% of the variance and the two items represented severe forms of abuse, and had an acceptable internal consistency reliability , and component loadings ranged between 0.91 and 0.89. We ultimately calculated scale scores as an occurrence of any of the behaviors comprising the scale , as the distributions of the items were heavily left-censored. As a summary measure, we also examined the occurrence of any of the ten human rights violations. Considering the occurrence of all ten behaviors, alpha was still acceptable . --- Mental health factors Social functioning measures the extent to which physical and emotional health interferes with or limits normal social activities. Four items measured the extent and frequency that participants experienced these physical and emotional problems 30 days prior to entering treatment on two scales, 0 to 3 and 0 to 3 . The four scale items were internally consistent . Suicide ideation measures the extent to which the participants had suicidal thoughts 30 days prior to treatment using a single item adapted from Lung and Lee . 25 Participants responded on a 0 to 4 scale. Suicide attempts was also measured by asking participants if they had attempted suicide 30 days prior to entering treatment. --- Substance use In order to determine the frequency and types of drugs being used among this population, participants were asked how often they used 14 substances in the past 6 months and past 30 days prior to entering treatment. As one goal is to examine the prevalence of substance use among the women in these DAT centers, all items were dichotomized to use or no use . Here, we focused only on opium, hashish, heroin, and "crystal" . . Alcohol use was nearly nonexistent in this population with only one participant reporting drinking three out of 30 days prior to entering treatment. This low prevalence of alcohol use is likely because alcohol use is strictly against religious and government law and highly stigmatized. --- Individual characteristics Participants indicated their age , marital status , ethnicity , living situation prior to treatment , and whether they had children. Participants indicated whether they were literate, their level of education , whether they were employed 6 months prior to entering treatment, and whether they had experienced a loss of a close family member due to war/conflict within the last 2 years. Participants rated 18 reasons for entering treatment using a 0 to 3 scale . --- Data collection PIRE partnered with D3 Systems, Inc, a social and market research company based in Washington DC, and the Afghan Center for Socio-Economic and Opinion Research in Afghanistan to collect the data for this study. ACSOR was founded in 2003 by D3 Systems and is a registered market and opinion research agency in Afghanistan with trained Afghan researchers and interviewers. ACSOR interviewers for this study included trained medical students residing in Afghanistan. An in-person structured interview that included questions previously validated in other treatment outcome studies was developed by PIRE, and carefully reviewed by ACSOR field staff and an expert panel of four Afghan DAT center directors or associate directors. Revisions were made to clarify meanings and to ensure cultural appropriateness of phrasing and terminology. The final instrument was translated into Pashto and Dari and back-translated by ACSOR field managers to ensure linguistic equivalency. The translated instrument was also reviewed independently by two bilingual Afghan nationals contracted by PIRE. Data used in this paper are drawn from the in-person baseline structured interviews that were conducted with female patients in three Afghan DAT centers by ACSOR trained female interviewers from February 2010 to September 2010. Consent forms and interview questions were read aloud by the ACSOR interviewers to the patients due to low literacy levels. Patients were provided with a consent form that was read aloud to describe the study, procedures, risks, and safeguards. Patients first consented to the release of their names and admission dates to the research team, and then to participate in the study. Patients were informed that their participation was voluntary and that their decision on whether to participate would not result in any penalties or benefits to them or to the centers. Patients were informed that their responses would be confidential and that they could decline to answer any questions. If the patient signed the consent form, the baseline interview was conducted at that time in a private room in the DAT centers to ensure confidentiality. The interviews took about 1 hour to complete. Participants were given a US$5 incentive for completing the interview. --- Data analyses Simple percentages and means were calculated to address research questions one and two. For research question two, we rounded scale scores to the nearest integer, such that they could be interpreted according to the actual response scale labels in the questionnaire. Inferential analysis examined relationships with human rights violations for research questions three and four. Research question three was answered by examining the relationship between individual characteristics and human rights violations using logistic regression. The two individual characteristics that were not dichotomous were split at the median response to yield 40 years of age and younger versus over 40 years old, and no education versus some education. All four measures of human rights violations were regressed on all of the individual characteristics in four analyses. Research question four was answered by examining the relationship of mental health problems and human rights violations using logistic regression. We regressed all four measures of human rights violations on all mental health factors. --- Results --- Individual characteristics Of the 172 female participants with usable data, the mean age was 39 years with a range of 18-70 years. Participants were mainly Turkmen , Pashtun , Tajik , or Hazara . Seventy-two percent of participants were married, 15% were widowed, and 11% were single. Of those who were married, 96% of married participants had an arranged marriage, while 11% reported being forced to marry someone they did not want to marry. Most of the sample had children , and, of those, the average number of children was two per participant with an average of two children living with them at the DAT centers. Before entering the DAT centers, 52% of participants lived with family and 45% lived with their spouse. The majority did not have any formal schooling. Most of them could not read before entering the DAT centers . Most participants had not been employed 6 months prior to entering the centers. Thirteen percent had lost a close family member in the past 2 years due to war. When given a list of 18 reasons for entering the DAT center, 63% said that family wanting them to go into treatment was "very important." Other reasons considered "very important" were: "You decided for yourself that you wanted treatment" ; "You had medical or physical problems" ; "Your friends wanted you to go" ; and "Spouse or family was shamed/stigmatized by drug addiction" . The most commonly abused substances by participants were opium, crystal, hashish, and heroin . A total of 91% had used one or more of these four substances in the 6 months prior to entering treatment, while 88% had used one or more substances 30 days prior to entering treatment. Some participants reported no use in the past 6 months or past 30 days , which is likely due to some participants trying to stop using drugs while on a waiting list prior to entering treatment. The most abused substance by participants was opium with 68% using in the 6 months before treatment and 66% using in the 30 days before treatment. The second most abused substance by participants was "crystal" with 28% of participants using in the past 6 months and 22% using in the past 30 days. These four substances account for the majority of substance use reported by these participants. Only three participants reported using other drugs asked about on the questionnaire in the past 6 months and the past 30 days. --- Research question one: extent of human rights violations Considering base rates, 50% of participants reported experiencing at least one form of human rights violations prior to entering the DAT centers; 35% reported gender-based inequality, 36% reported maltreatment, and 4% reported abuse . We realize that 4% is an extremely low base rate, so all correlations listed for abuse must be interpreted with extreme caution. We felt it was necessary to keep abuse in the analyses since physical and sexual abuse are issues Afghan women often face, but rarely self-report due to various reasons such as stigmatization and cultural norms. 12 Research question two: extent of mental health problems As Table 3 shows, almost the entire sample of women entering the DAT centers experienced some limitations with social functioning 30 days prior to entering the centers, when defining "slightly/rarely" through "quite a bit/all the time" responses as having limited social functioning. Additionally, a large proportion of the sample had experienced some suicidal ideation 30 days prior to entering the centers, when defining "rarely" through "extreme" responses as having had suicidal thoughts. Additionally, 27% of participants attempted suicide at least once 30 days prior to entering the centers due to feelings of sadness or hopelessness. --- Research question three: individual characteristics as risk factors for human rights violations As can be seen in Table 4, women who were married were 5.08 times more likely to report indicators of maltreatment, and women of Pashtun ethnicity were 5.80 times more likely to experience at least one of the human rights violations about which we asked. Women who were literate were 14.74 times more likely to report at least one of the human rights violations about which we asked. Women who were employed were 4.76 times less likely to report gender-based inequality . Women who entered DAT because of their own desire were 2.30 times more likely to report being victims of maltreatment , 3.34 times more likely to report gender-based inequality , and 2.91 times more likely to report at least one human rights violation . 5). --- Research question four: mental health problems as risk factors for human rights violations --- Discussion --- Profile of women entering drug abuse treatment The majority of women in the DAT centers had not received formal schooling, could not read, and had not been employed. This is consistent with the profile of a typical female Afghan drug user who has even less education and is more than twice as likely to not have a job than other females. 12 Lack of education and employment among Afghan females is also due to the fact that they are expected to marry young, typically around the age of 15 years old, and are pressured to have children immediately. 26 Most women in Notes: a 1 = strongly agree, 2 = agree, 3 = disagree, 4 = strongly disagree; a 0 = not at all/never, 1 = slightly/rarely, 2 = moderately/sometimes, 3 = quite a bit/all the time; b 0 = not at all, 1 = slightly, 2 = moderately, 3 = quite a bit, 4 = extremely; c 0 = no, 1 = yes. our sample reported an "arranged" marriage, while a smaller number reported being "forced" to marry someone they did not want to marry. The most commonly abused substances by women entering the DAT centers were opium, crystal, hashish, and heroin. Most of the study participants had used one or more of these substances 30 days prior to treatment. Our results are similar to those reported by the United Nations Office on Drug Use and Crime, 12 which found that Afghan citizens are increasingly dependent on cannabis, opium, heroin, opioids, and tranquilizers and suffering severe mental, physical, and social problems as a result of their addiction. --- Human rights violations Half of the women in our sample experienced at least one type of human rights violation prior to entering the DAT centers. About one-third of these women experienced some form of maltreatment, including denial of food or shelter, forced to live in social isolation, forced to consume drugs, and forced to work in poppy cultivation. This is consistent with findings from similar studies that indicate "lack of food and water" is an extremely traumatic event, 9 social isolation is an ongoing problem, 7 and husbands sometimes force their wives to consume drugs to keep them from fighting back or from leaving. 13 While other research has not reported the rates of women being forced to work in poppy cultivation, news reports indicate this is a reality for some Afghan women. 27,28 About one-third of the women experienced gender-based inequality prior to entering the DAT centers, including being forbidden to go in public without a male relative, forbidden to drive a car, and denied education. These findings are not surprising given the strict enforcement of laws forbidding females to attend school or work outside the home. 3 Although the Taliban regime has ended, some maintain that women's rights have yet to be restored to pre-Taliban traditions, 16,26 and the majority of females are still not attending school. 29 Physical and sexual abuse violations had a relatively low base-rate phenomenon with a very small percentage of women reporting these types of abuse prior to entering the DAT centers. This is consistent with other reports finding this to be a rare -and likely underreported -event. 12 In an attempt to address the issue of underreporting, a 2008 United Nations Office on Drugs and Crime study 30 asked Afghan women whether they knew any women who were addicted to drugs and had been raped, and 54% said yes. This suggests that sexual abuse does occur among this population but that it is not reported due to stigma or shame. Alternatively, it is also possible that some women may not feel this type of behavior is a violation of their rights, but rather a tolerated behavior between husband and wife in Afghan society. 31 As evidence of this, a law was passed in 2009 permitting "marital rape" in Afghanistan. 32 --- Mental health problems Most of the women in this sample reported limited social functioning, which is likely due to the fact that women are denied rights and freedoms that would encourage social functioning, such as walking freely in public, going to school and work, and talking openly in social settings. 33 Many of the women had experienced suicide ideation before entering the centers, which is common among this population. 8 And, nearly one-third of the women had attempted suicide 30 days prior to entering the DAT centers, which is a higher percentage than those reported from a sample of Afghan women in Taliban controlled areas and non-Taliban controlled areas . 8 Further, this percentage is extremely high when compared to the worldwide rate of suicide attempts. 34 --- Risk factors for human rights violations Married women were more likely to report maltreatment prior to entering the DAT centers. This is consistent with research that indicates that human rights violations among Afghan women are inflicted mostly by husbands. 3,13,35 Also, women of Pashtun ethnicity were more likely to have experienced at least one form of human rights violation prior to entering the DAT centers, which follows research that indicates that Pashtun communities still impose Taliban-like conditions where women are treated dishonorably and denied basic rights. 36 Women who reported being able to read also reported greater human rights violations prior to entering the DAT centers, which might be explained by the fact that more educated Afghan women are more aware of their basic rights and thus more likely to report violations. 37 Employed women were less likely to have experienced gender-based inequality, which is likely because women who are working outside the home have fewer social restrictions conferred upon them. Women who entered treatment because of their own desire were more likely to have experienced gender-based inequality. Because these DAT centers offered women residential treatment, women may have seen the centers as an alternative form of shelter. Women with limited social functioning were more likely to have experienced all forms of human rights violations except for gender-based inequality. Women who are mistreated and abused likely experience inadequate social functioning due to the restrictions placed on them by their spouses or family members, and possibly by the shame and terror they feel from experiencing such abuse. Although no significant relationships were found for women who had suicide ideation, women who had attempted suicide were more likely to report experiencing all forms of human rights violations. These findings emphasize that human rights violations have a severe impact on the mental health of Afghan women, and suggest that reducing such violations might also help reduce suicide attempts among these women. The results from this study related to the relationships between mental health and human rights violations are supported by Cardozo et al's research 9 that indicates the most traumatic events reported by Afghan women were related to denial of human rights, and other research that shows that women experiencing these violations also report serious mental health problems. 8 Several limitations of this study need to be addressed. First, this was not a generalizable sample of drug-addicted women in Afghanistan, but rather a purposive sample of women who entered three female DAT centers in Afghanistan, which were the only addiction services available for women at the time of this study. The majority of Afghan women live in rural areas, where little has changed for decades, and daily conditions are especially harsh in western Afghanistan. 3,35 Because the women sampled had access to treatment, it could indicate that these women had greater means, resources, or support than other drug-addicted women in Afghanistan. Second, we have very low base rates for physical and sexual abuse in the human rights violations scale. Future research with this population needs to be conducted to help us better understand the prevalence of sexual and physical abuse as well as related attitudes around this issue. Third, we had small effect sizes for our results in general. However, we still feel that these results provide a first step toward better understanding the severe impact of human rights violations on Afghan women. Finally, due to the fact that research on the denial of women's human rights in Afghanistan is in its early stages, much work needs to be done with regard to scale development. For example, there is a lack of formative work determining what Afghan women perceive as violations to their rights versus moral or cultural expectations. Qualitative research could help enrich the results reported from this study and would better our understanding of the perceptions and impact of human rights violations among Afghan women. --- Conclusions and implications This study found that women entering DAT centers had experienced a high rate of human rights violations prior to entering the centers. To be effective, DAT centers need to add services that help female patients cope with the human rights violations they have experienced. Also, services should be provided that may help prevent future human rights violations. For example, this study showed that women who were employed were less likely to have experienced human rights violations. Therefore, offering educational classes and vocational skills training may provide Afghan women with opportunities that could prevent this type of abuse. It is important that treatment programming take into consideration the cultural and contextual factors of women living in a war-torn country where denial of women's basic human rights is the norm. The study showed that female patients who reported coming to the DAT centers due to their own desire were also more likely to have experienced human rights violations prior to entering the centers. Further, patients who were married, literate, unemployed, or of Pashtun ethnicity were more likely to have experienced human rights violations. These individual characteristics should be used as a guide to identify patients at treatment entry who are most in need of special services that help women deal with human rights violations. Significant relationships between mental health problems and human rights violations were also found, including limited social functioning and suicide attempts. More emphasis should be placed on helping women in treatment cope with their experiences of human rights violations which, in turn, may strengthen their mental health. Because women in the DAT centers in this study come from rural areas with minimal professional services for them to use after residential treatment, it is important that these specialized services be provided at the DAT centers. This study found that many drug addicted women in Afghanistan who enter DAT have mental health problems. As such, many of the women in Afghan DAT programs suffer from co-occurring substance abuse and mental disorders. Understanding the importance of integrating treatment services for substance abuse and mental disorders is critical for Afghan residential DAT providers to assist their female patients in achieving effective and healthier lives. Further, despite its prevalence, few DAT programs assess, treat, or educate patients and/or staff about trauma. 38 Failure to address this issue has serious consequences, including relapse, greater violence that leads to increased substance abuse, and higher rates of depression. 39,40 Given the connection between spirituality and recovery from trauma such as the mental health problems found in this study, 41 treatment approaches that include a spiritual component offer survivors an opportunity to explore and reestablish their own personal sense of spirituality as they reflect on the lessons learned from their trauma experience. Given the prominence of the Islamic faith in Afghan culture, incorporating spirituality into the counseling regimen of Afghan women's DAT programs represents a promising practice that could assist in their recovery from addiction and trauma. In conclusion, more research about human rights violations and mental health problems among Afghan women is needed. Further, an evaluation of the recommended changes in Afghanistan DAT centers should be conducted in a larger study in order to determine the effectiveness of these services in increasing mental health and coping among Afghan women. --- Disclosure The authors report no conflicts of interest in this work. --- International Journal of Women's Health --- Publish your work in this journal Submit your manuscript here: http://www.dovepress.com/international-journal-of-womens-health-journal The International Journal of Women's Health is an international, peerreviewed open-access journal publishing original research, reports, reviews and commentaries on all aspects of women's healthcare including gynecology, obstetrics, and breast cancer. Subject areas include: Chronic conditions ; Endocrine and autoimmune syndromes; Sexual and reproductive health; Psychological and psychosocial conditions. The manuscript management system is completely online and includes a very quick and fair peer-review system. Visit http://www.dovepress.com/ testimonials.php to read real quotes from published authors. International Journal of Women's Health 2012:4
Denial of human rights, gender disparities, and living in a war zone can be associated with severe depression and poor social functioning, especially for female drug abusers. This study of Afghan women in drug abuse treatment (DAT) centers assesses (a) the extent to which these women have experienced human rights violations and mental health problems prior to entering the DAT centers, and (b) whether there are specific risk factors for human rights violations among this population. A total of 176 in-person interviews were conducted with female patients admitted to three drug abuse treatment centers in Afghanistan in 2010. Nearly all women (91%) reported limitations with social functioning. Further, 41% of the women indicated they had suicide ideation and 27% of the women had attempted suicide at least once 30 days prior to entering the DAT centers due to feelings of sadness or hopelessness. Half of the women (50%) experienced at least one human rights violation in the past year prior to entering the DAT centers. Risk factors for human rights violations among this population include marital status, ethnicity, literacy, employment status, entering treatment based on one's own desire, limited social functioning, and suicide attempts. Conclusions stemming from the results are discussed.
INTRODUCTION Inconsistent approaches to conceptualising and measuring caregiver burden generate considerable heterogeneity in research findings. This is further complicated by varied samples of both patients and caregivers . Studies of burden in caregivers of inpatients and recently discharged patients , have all reported higher levels of burden than those in stabilised community samples . Few studies outside North America have examined levels of caregiver burden across different ethnic groups. White American caregivers report more negative consequences and burden than Black American caregivers , even though the former were less likely to reside with their ill son or daughter . No previous studies have directly examined differences in burden among carers from Indian and White families in the UK. Expressed emotion studies find higher EE scores for White than Indian carers raising the possibility that caregiver burden may be higher in UK Whites than in UK Indians. --- MATERIAL AND METHODS --- Setting and Samples The sample comprised two groups of patients diagnosed with schizophrenia and their primary carers : British North Indian Sikh dyads and White British dyads . The Indian group were recruited from Southall, Middlesex, which is home to a large homogenous North Indian population, and the White group were recruited from areas adjacent to Southall and from East Oxford. Indian parents were all born and raised in North India and migrated as adults to the UK. Indian patients were either born and raised in the UK or migrated here before the age of 11. Local ethical approval was obtained from West London Mental Health Trust and Oxfordshire Mental Health Trust. The sample was obtained by an extensive and systematic review of community mental health team caseloads in Southall, Northolt and East Oxford. Key-workers and care coordinators approached patients about the study or gave approval for their patients to be contacted. Patients who agreed to take part were interviewed and asked to nominate their primary parental carer. Nominated parents were contacted and interviewed by a researcher blind to that patient"s symptoms and functioning. Eligible patients were: aged 18-50 years, White British or British North Indian Ethnicity , diagnosis of schizophrenia or schizoaffective disorder, 2-15 years duration of illness, living with, or in weekly contact with a parental carer, in regular contact with community mental health services and able to provide written informed consent. --- Instruments All instruments used for the study were well known and well validated. We obtained a Hindi version of the General Health Questionnaire for use with the Indian parents, but SS, a native Punjabi speaker translated the Perceived Family Burden Scale for the purposes of this study with the help of a Hindi speaking research assistant. All parents completed the PFBS, which was designed to investigate family interaction predictors of early relapse in schizophrenia. It distinguishes between objective and subjective components of family burden by asking first if symptom behaviours are present and second if they are bothersome. Each of the 24 items is rated on a 4-point Likert scale covering "not at all", "a little", "considerably" or "a great deal". Behaviours form the following four clusters: anxiety-depression , uncritical , passivity and aggression . Parents also completed the GHQ-12, which is used to measure distress and to screen for psychiatric morbidity in the general population and has good levels of validity and reliability . The 12-item version is quick and easy to administer and can be scored using a Likert scale or as a screening instrument using bimodal scoring . It has been validated in Indian women living in Southall with an optimal threshold for caseness of 2/3. Social and demographic characteristics were collected from both parents and patients. Indian parents were interviewed with a translated version of the parent interview by Hindi/Punjabi speaking researchers , and White British researchers interviewed White parents. Parents were interviewed at home within 4 weeks of their son or daughter"s interview. Patient diagnosis was confirmed by the International Classification of Diseases diagnostic criteria for research . Patient psychopathology was measured by Positive and Negative Symptom Scale . All patient interviews were conducted by HL. --- Statistical Analyses This study had 77 % power at 5 % significance level to detect medium to large effects according to Cohen"s guidelines . Group differences were investigated using ANOVA , independent t-tests or Mann-Whitney U-tests . Chi-squared tests were used to analyse categorical variables in both the patient and parent groups. Fisher"s exact test was used to analyse categorical data where expected cell values in the contingency table were less than 5. --- RESULTS The case notes of 1849 patients were screened in four community mental health teams . Of these 1728 were excluded on the basis of diagnosis, duration of illness, ethnicity, age or because they did not have a parental carer. Of the 121 patients eligible and approached to take part, 60 were White and 61 were Indian. Sixteen of the White sample agreed to participate. Of the 44 White refusals 27 were from parents and 17 from patients. Twenty-three of the Indian sample agreed to participate. Of the 38 Indian refusals 21 were from parents and 17 from patients. In total 82 dyads declined participation. Patients refused to participate because they were "too ill" or because "taking part would cause distress for themselves or their families" . Parents were either too busy , or reluctant to talk about their son or daughter for the purposes of the interview . There were no differences between the groups in reasons for refusing study entry, and a comparison of participants and non-participants in terms of age, sex, diagnosis and duration of illness were also performed and revealed no differences between the groups. The slight difference in participation rates between the two groups may be explained by the more positive attitudes towards the psychiatric profession held by Indian families. The small sample sizes were a consequence of high refusal rates, which are common problems in studies of individuals with schizophrenia , but in this study were also exacerbated by the addition of parental refusal rates, a problem which has been acknowledged by other studies recruiting both patients and carers . --- <Figure 1 here> --- Socio-demographic characteristics Table 1 shows the socio-demographic characteristics of the samples at baseline. Two-thirds of Indian and three-quarters of the White parents were female. Three quarters of White parents were educated to A-Level standard or equivalent compared to just over a quarter of Indian parents. However, none of the White parents progressed beyond A-level, whereas just under a fifth of Indian parents attained tertiary level education. None of the White parents were "unemployed" at baseline compared to over one third of the Indian parents. The majority of Indian parents lived with family compared to just over half of White parents, and the former were 3.6 times more likely to live with their son or daughter than their White counterparts. Indian households were also larger than White households. There was no difference between the groups in the proportion of parents who owned and rented properties. Just under a quarter of Indian patients were married compared to just one White patient. Indian patients were 4.7 times more likely to live with their families than White patients. Indian patients had higher PANSS negative symptom scores than White patients, but did not differ significantly from the White patient group in duration of illness or other symptoms. <Table 1 here> --- Perceived burden scores The overall scores for objective and subjective burden were low, and there were no statistically significant differences between the two groups of parents . In addition, the mean GHQ scores of parents did not meet the threshold scores for caseness and there were no differences between the groups. Analysed in accordance with the binomial scoring system just over a third of the Indian parents, and one fifth of the White parents showed evidence of mild distress. A smaller number in each group scored higher indicating moderate to severe psychological morbidity. There were no statistically significant difference Indian and White parents in GHQ caseness. <Table 2 here> Table 3 shows the PFBS cluster scores for both Indian and White parents. A 2 x 4 ANOVA with between participant factor Group and within participant factor Subscale was conducted for objective and subjective scores separately. This approach appropriately controls for Familywise error rates where a scale comprises several separate subscales which are to be considered separately . Main effects of Group were not significant indicating no overall group differences in burden scores. Main effects of subscale reflected generally lower ratings on the aggressive cluster compared to others . There was a significant Group x Subscale interaction on objective = 6.22, p=.001, partial η 2 = .14) and subjective = 7.32, p < .001, partial η 2 = .17) burden measures. Bonferroni corrected follow up t-tests were conducted to elucidate the nature of this interaction. These revealed significant group differences on the uncritical cluster alone , for objective = 2.83, p < .01) and subjective = 2.74, p < .01) burden . <Table 3 here> <Figures 2 & 3 here> --- DISCUSSION --- Parents social and demographic & baseline characteristics There were some striking differences between the two groups of parents. Indian parents achieved a higher level of education despite a greater proportion of White parents receiving foundation level education. These findings appear to reflect national patterns where a greater proportion of British Indians achieve above average education levels and have greater participation rates in higher education than Whites in the UK . These differences may reflect gender and social norms in the country of origin or, alternatively, may be a consequence of interrupted schooling caused by migration to Britain. At interview more White parents were employed than Indian parents. In the UK, British Indians have slightly higher unemployment rates than their White British counterparts , while unemployment in other minority groups is substantially higher . There were no differences in the number of Indian and White parents who were retired or considered their main role as a housewife. The majority of Indian parents lived with other family members, who nearly always included their ill offspring, whereas White parents lived alone or with a spouse. Similar patterns of residence have been reported by other studies comparing White families with other ethnic groups . Indian households were larger than White households, a finding which also seems to reflects national patterns . The high rates of home ownership in both groups also reflects UK patterns with British Indians and White Britons having higher rates than other ethnic groups . --- Patients social and demographic baseline characteristics Indian and White patients were similar in many respects. They were comparable in age and time in general education but more Indian patients were educated to degree level. Given the age of onset of schizophrenia it is striking that over one third of the Indian patient sample was educated to this level. This may reflect the considerable emphasis placed on the value of education and business success by the North Indian British community, and the support provided by Indian families in their co-resident patterns. The most dramatic difference was the number of Indian patients who were married. Clearly this reflects the importance of marriage and family in Indian community and Dharmic religions. In addition, Indian family cultural norms and kin involvement may also significantly increase marriage opportunities for mentally ill relatives. The high rates of home ownership and educational achievement of UK Indians suggests that they are relatively well acculturated compared to other ethnic groups in the UK. However, patterns of kin residence and the importance of marriage suggest the maintenance of strong cultural traditions from the country of origin. --- Patient clinical characteristics Clinically the samples were very similar apart from Indian patients having higher negative symptoms scores. Our patients were mild to moderately ill with symptoms scores ranging from average to below average for medicated community patients . --- Levels of burden & psychiatric morbidity in parents Generally both Indian and White parents experienced low levels of burden, a finding reported in other studies and there were no differences between the groups. Low objective burden scores suggest that parents experienced few bothersome behaviours in their offspring, and the low subjective burden scores suggest that the behaviours they reported gave them little cause for concern. These burden levels reflect the mild/moderate symptom profile of the patients. High levels of burden have been consistently associated with high psychological distress in caregivers but the direction of causality is unclear. Therefore it was not a surprise when levels of parental distress were generally low with no differences between the groups. Only one third of the Indian sample and one fifth of the White sample experienced mild distress measured with the GHQ. This proportion of distressed Indian parents was lower than some caregiver burden studies in mental illness and comparable with others . The proportion of distressed White parents was unusually low when compared to GHQ case levels of 29-60 % reported by other studies . Indeed the proportion of White parents reporting distress in this study was just above that reported for community samples . These low levels of distress suggest that the burden levels we recorded are accurate and not an underestimation due to small sample sizes. Indian parents were significantly more burdened than their White counterparts by positive psychotic behaviours . Several studies of caregiver burden and schizophrenia have demonstrated that the strongest predictors of burden are patient symptoms . Pai & Kapur also found a significant correlation between patient symptoms and family burden in India. In our study, Indian patients had higher negative symptom scores than White patients and as such one might expect Indian parents to report more concern with symptoms in the passivity cluster. However, this does not appear to be the case, and the data suggests that Indian parents may be more tolerant of passivity behaviours and more sensitive to positive psychotic behaviours. This may, possibly, be a consequence of living with their ill offspring. --- Co-residence Other studies have also found that co-residence was associated with burden in parents . Pai and Kapur found that the behaviours most burdensome to family members in India were those which disrupted family routines and induced stress in other family members. In our Indian sample yelling and using abusive language are those that impact most on family members, and are therefore most burdensome, particularly in larger and more crowded households. However, these findings differ from those reported by Gopinath & Chaturvedi , where relatives of patients with schizophrenia in India found behaviours related to inactivity and poor self care more distressing. Why this difference exists is unclear; one explanation might be that relatives in India are more likely to rely on ill family members economically and are therefore more distressed by work inactivity . None of Indian parents in our study were financially dependent on their ill offspring. The limitations of this study were the small sample sizes and a possible selection bias , both of which may have increased the possibility of finding false negatives. In addition the samples were deliberately restricted to control for confounding variables , which may obscure potential relationships between ethnicity and burden. Furthermore, restricting the study to patients with an established illness resulted in a relatively stable sample with mild-moderate illnesses; this narrowed the range of observed burden scores. The findings from this study suggest that the extent of parental burden in UK Indians and UK Whites may be comparable, while some of the behaviours that influence it may differ. Also, UK Indians may also share some similarities with carers in India, as co-resident living patterns and notions of familial respect are highly valued core cultural elements that are retained despite migration. The interaction of local socio-economic and patient clinical factors may explain the similarities between the two UK groups, while cultural patterns of co-residence explain the similarities with non-migrant Indians. An investigation of the socio-demographic, clinical and service use determinants of burden in these samples was performed and will shortly be reported in a linked paper . This is the first study to examine burden in a roughly matched sample of British Indians and White British parents caring for a son or daughter with schizophrenia. As such the findings are preliminary and require further investigation. Nevertheless, these results challenge the prevalent notion that Indian families cope markedly better and require less support than White British Carers. Therefore clinicians may wish to consider the potential sensitivity to psychotic behaviours among Indian carers. In addition, those responsible for allocating or organising funding and resources may also wish to consider that Indian carers require the same support as White British carers. --- DISCLOSURE The preliminary results of this study were presented at the European Network for Mental Health Service Evaluation .
Caregiver burden in mental illness is believed to differ between ethnic groups, but few studies have examined this in schizophrenia in the UK.
BACKGROUND In 2008, according to the Centers for Disease Control and Prevention's Behavioral Risk Factor Surveillance System , the median rate of alcohol use across the United States for women of childbearing age was 50%. 1 The median rate of binge drinking was 15%. 1 Women who are planning to conceive a child in the next 12 months continue to drink alcohol, with 54% of these women reporting alcohol use within the past month. 2 The Pregnancy Risk Assessment Monitoring System showed that in 2008, between 24% and 70% of women who recently gave birth reported drinking alcohol during the 3 months before they became pregnant. 3 Because many women do not recognize that they are pregnant until 6 weeks or later into pregnancy 4 and approximately 50% of pregnancies in the United States are unplanned, 5 this high prevalence of use among preconceptional women poses a risk to maternal health and fetal development. Most serious, BRFSS data show that approximately 12% of pregnant women drank alcohol at least once in the past 30 days and 2% engaged in binge drinking. 6 Drinking alcohol during pregnancy can result in fetal alcohol spectrum disorders including fetal alcohol syndrome . FAS is marked by abnormal facial features, growth deficiencies, and central nervous system problems along with possible problems with learning, memory, attention span, communication, vision, or hearing. 7 Other examples of FASDs do not include the characteristic facial features associated with FAS but do involve functional or mental problems as in alcohol-related neurodevelopmental disorder or physical abnormalities, as with alcohol-related birth defects. FASDs are 100% preventable, as long as women refrain from consuming alcohol while pregnant. However, FASDs remain among the most common preventable causes of birth defects and developmental disabilities within the United States. 8,9 The US Surgeon General, CDC, and other health authorities currently recommend abstaining from alcohol use throughout pregnancy, because there is no known safe amount, no safe time, and no safe type of alcohol to drink during pregnancy. 8,10,11 Despite Surgeon Generals' Advisory statements in 1981 and 2005 regarding alcohol use during pregnancy, 12,13 the warning labels on alcoholic beverages, and ongoing education efforts about the dangers of alcohol use during pregnancy, [14][15][16] BRFSS data from 1991 through 2005 showed little change in the prevalence of alcohol use or binge drinking by pregnant and nonpregnant women over that time. 6 Clearly, a substantial proportion of pregnant women and women who might become pregnant continue to consume alcohol and face the risk of alcohol-exposed pregnancy , indicating a need to examine influences related to women's perceptions of alcohol use and pregnancy. Women have held numerous misconceptions about alcohol use during pregnancy, including that some types of alcohol pose less risk than others, 17,18 that drinking only causes problems early in pregnancy, 17 and that women need to consume large amounts of alcohol to cause harm. 17,19 However, accurate knowledge does not necessarily lead to a decrease in alcohol use. 20,21 Instead, other strategies may prove more beneficial than increasing knowledge alone, such as reinforcing the perceived risks of drinking alcohol when pregnant or when one could become pregnant and countering the perceived benefits 17,[22][23][24][25] ; providing alternatives to drinking ; and encouraging support from partners and others for a pregnant woman's decision to abstain. 17 Health care providers can play an important role in encouraging abstinence from alcohol during pregnancy, but the literature indicates that they do not always seem to do so. 19,26,27 In fact, it appeared that sometimes physicians and other health care providers encourage women to participate in light drinking during pregnancy . 17 In most cases, related media campaigns and other prevention programs have either not been evaluated or provided little evidence of effectiveness beyond possibly increasing knowledge of FASDs. [14][15][16] Conflicting messages in the media, among women's health care providers, and through other sources may contribute to decisions to drink prior to pregnancy recognition or during pregnancy and can create confusion for women. Health educators could act as a valuable source of accurate information for women to help address this confusion. --- PURPOSE The goals of this focus group research study were to further explore women's knowledge and beliefs about alcohol consumption and its risks during pregnancy along with their perceptions of social influences on related behaviors; identify where women go to learn about alcohol use during pregnancy, what they are hearing about it, and how this information influences their behavior; and inform future communication messaging and education strategies to prevent AEPs. The study aimed to update and broaden findings on related knowledge, beliefs, social influences, and information sources because much of the previously described research relied on data collected 10 or more years ago with demographically narrow subpopulations. The focus group format allowed for an in-depth examination of the issues with a demographically diverse sample of women, along with the opportunity for the women to suggest messages for future communication concepts and educational campaigns. --- METHODS --- Focus Group Guides Focus group guides were based on an extensive literature review and developed through an iterative process to narrow down the number of discussion topics. Discussion topics included knowledge, attitudes, and beliefs/misconceptions about alcohol use during pregnancy; social influences and related strategies to resist pressures to drink alcohol during pregnancy; and trusted sources of health information and messages to prevent alcohol use during pregnancy. Example focus group questions are included in Tables 1 through 3. Complete guides, including follow-up probes, can be obtained from the primary author. For example, one question assessing knowledge asked, "What have you heard about drinking during different stages of pregnancy?" To encourage additional discussion, a probe asked, "Is there any time during pregnancy when it is OK to drink?" and focus group moderators followed up by asking the women why they thought drinking alcohol was or was not OK at different stages. The design of the focus group guides allowed for a discussion lasting approximately 60 minutes. --- Focus Group Segmentation Design A segmentation analysis, based on existing health marketing survey data and information from the literature review, guided the development of a focus group segmentation design that ensured the inclusion of a variety of relevant women. This design focused on 3 main groups of nonpregnant women: women who have had a baby within the past year; women who are currently trying to get pregnant or who plan to become pregnant in the next year; and women not trying to get pregnant but who are at risk of having an AEP . The segmentation design also separated women based on their age , because age appears to moderate the use of alcohol at different stages of pregnancy, with younger women more likely to drink and binge drink prior to and during early pregnancy 4,20,28,29 and older women more likely to drink later in pregnancy. 6,24,[30][31][32] The design further segmented the focus groups based on race/ethnicity by having separate focus groups for White, Black/African American, and English-speaking Hispanic women . In general, racial/ethnic groups experience disparities in many areas related to health, including pregnancy and childbirth, 33,34 and have different cultural norms related to alcohol use. Race also appears an important predictor of prevalence of alcohol use prior to and during pregnancy, with White women more likely to drink than Black/African American or Hispanic women. 4,28,29,31,32,35,36 This segmentation design resulted in 18 groups . These groups were held in 2 cities , specifically to include 2 different regions of the country. The design added one mixed focus group in each of the cities , for a total of 20 groups with an average of 7 participants per group. --- Participant Recruitment A professional recruiting firm recruited women for this study by using demographic factors matching the segmentation design to narrow down their existing focus group participant database of 160 000 individuals across the 2 cities. After contacting a potential participant from this convenience sample by phone, the recruiter obtained verbal consent from the woman to screen them for eligibility. Eligibility criteria for the focus groups included the following: ages 18 to 35; English speaking; drank alcohol in the past 3 years for other than religious reasons; not currently pregnant; and gave birth in the past 12 months or trying/planning to get pregnant in the next 12 months or not trying to get pregnant but have had vaginal intercourse in the past 90 days, have had a drink of alcohol in the past 90 days, and were not using effective means of birth control . Overall, recruiters placed more than 4000 calls for each location and spoke to more than 2000 women to achieve a sufficient number of recruits for each focus group. --- Focus Group Procedures The focus groups took place in 2010 in professional focus group facilities, with each focus group consisting of between 4 and 9 participants. Arriving women were rechecked for eligibility and completed informed consent forms. An experienced moderator conducted each focus group discussion using the focus group guides and all groups were audiorecorded and professionally transcribed. After the focus group session, participating women completed a short, anonymous questionnaire to provide information on their demographics, health behaviors, and recent/current alcohol use . All women then received debriefing information on the effects of alcohol use during pregnancy and on the risks of an AEP. Participants received an incentive of $75 for their participation. --- Data Analysis The 4-person coding and analysis team reviewed and analyzed the focus group transcripts using steps adapted from Krueger and Casey. 37 The team categorized the responses according to a set of predeveloped codes that represented key theoretical constructs . The coding team then coded one transcript together to ensure that the data were coded consistently and objectively and discussed differences in coding and any emergent themes not being captured with the predeveloped coding structure. The coders then divided up and coded the remaining 19 transcripts. After coding, the qualitative data analysis program QSR NVivo 38 was used to produce descriptive reports for each code/theme. To assure consistency of coding across the transcripts, the analyst reviewed all of the reports for accuracy of coding and to crossreference between codes and themes. The reports allowed for the systematic summarization of responses from the individual to the group level and then to the cross-group level. The analyses identified themes across groups , examined findings topic by topic, and noted relevant quotes. The results presented below describe the themes and note the prevalence of particular views, knowledge, or experiences across groups when relevant. In most cases the view, knowledge, or experience was held by at least some women within a particular group but did not necessarily represent all of the women within that group. --- RESULTS --- Participant Characteristics Table 5 displays demographic information on the focus group participants overall and by pregnancy status. The 149 participants reported an average yearly income of around $40,000 to $60,000. Almost all of the women had graduated from high school, and 75% spent at least some time in college. More than half had given birth to at least one child , and at least a few women in each of the focus groups reported more than one birth. A large majority of the women drank at least one alcoholic drink in the past 30 days. These women consumed alcohol an average of 5.6 days in the past month, consuming 2.8 drinks on the days they drank. They binge drank about twice in the previous month. Some of the socioeconomic status variables and AEP risk factors differed greatly across the segmentation categories. Women in the older focus groups reported higher education levels and incomes on average than the younger women . White older women appeared more likely to be married than women in the other racial/ethnic or age groups except among the older women who had a baby in the past year . Alcohol drinking patterns also varied across the groups. For example, White 18-to 24-year-old drinkers in the group who had recently had a baby reported relatively low usage amounts . On the other hand, drinkers with the same demographics but who were in the "not trying but at risk for AEP" group reported relatively high usage amounts . These variations in risk factors and demographics among the groups should be considered when interpreting the findings. --- Knowledge, Attitudes, and Beliefs Table 1 provides a listing of the major themes related to the knowledge, attitudes, and beliefs participants had regarding alcohol use and pregnancy, along with example focus group questions, related findings, and illustrative quotes. In discussions at the beginning of the focus groups, a majority of the women expressed negative opinions of pregnant women who drink and provided a variety of strong pejorative comments to describe these women, such as irresponsible, selfish, stupid, uneducated, and ignorant. However, in 8 of the groups one or more participants expressed support for drinking in limited quantities or indicated that they drank alcohol during pregnancy. No participants endorsed the safety of drinking alcohol in larger quantities. In terms of knowledge of FAS, all groups except one had at least one member who had heard the term. However, at least some participants in 11 of the 19 other groups knew nothing about the condition. Younger women appeared to have less specific knowledge of FAS; at least some women in 7 of the 9 groups of that age category had no information about the term. More women appeared familiar with specific outcomes related to alcohol use during pregnancy; women in all 20 groups were able to describe problems that alcohol use during pregnancy might cause. The most frequently cited consequences included brain damage , learning problems , developmental delays , miscarriage or premature birth , and low birth weight or growth problems . Misconceptions-Although women across the groups expressed knowledge of the general harm of alcohol use during pregnancy, misconceptions about safe use later in pregnancy and the safety of drinking lesser amounts or certain types of alcohol were evident. When asked whether there was a safe time to drink during pregnancy, at least some women in 14 of the groups identified the first trimester as a crucial time period when the brain and other organs were being developed. Many participants also expressed "knowledge" of the safety of drinking in the third trimester; some women reported that they had heard this from their doctor. When asked specifically about how much is too much when it comes to drinking during pregnancy, younger Black/African American and Hispanic women appeared more likely to agree that any alcohol use during pregnancy was too much. In fact, 4 of the 6 groups of these women appeared to agree that it was better to abstain from alcohol to avoid the risk. More generally, women who opposed any alcohol use frequently stated that when faced with uncertainty about the amount of alcohol that could cause harm, it was not worth the risk of damaging the child. White women, especially those in the older groups , seemed more likely to say that they either knew someone who drank early in their pregnancy who had a healthy baby or that they themselves drank and had a healthy baby. They also appeared more likely to advocate the safety of some minimal drinking during pregnancy. In 2 of the 3 groups of White 25-to 35-year-olds, participants seemed to be in agreement that pregnant women could occasionally consume one glass of alcohol. In the third group, though some women advocated abstaining, others mentioned the safety of alcohol use in the third trimester and that they had known pregnant women who consumed alcohol and had healthy babies. The focus group guide did not include questions on the types of alcohol women used, but comments throughout the discussions demonstrated that many of the women held a common misconception about the safety of wine consumption. Across age groups, racial/ethnic categories, pregnancy status, and geographic locations, women reported that wine differed from liquor or other types of alcohol and perceived wine as safer to drink during pregnancy than other types of alcohol. Several women reported that "red wine is processed differently by the body" than other types of alcohol. In 7 of the groups, participants mentioned hearing information about the benefits of wine specifically from their doctor or health professional. Although women in most groups perceived benefits of wine consumption , younger women across all races expressed more skepticism of this information or less willingness to take the chance of drinking while pregnant. In addition, Black/African American women, though not less likely to hear about the benefits of wine, appeared less likely to believe or follow it. Several recent mothers in one group of Black/African American 18-to 24-year-olds described red wine consumption as more common among White women. Black/African American women in the focus groups suggested that this made White women's decisions to abstain from drinking more difficult than that of Black/ African American women who they said preferred liquor. Reasons for Drinking and/or Abstaining from Alcohol-When asked to provide reasons why women drink while pregnant, women in 17 of the 20 groups mentioned stress or stressors, including the child's father, money, or the pregnancy itself. Alcoholism/ addiction was the second most common reason discussed . Other commonly mentioned reasons for drinking during pregnancy included ignorance about the outcomes ; peer pressure ; selfishness, immaturity, and irresponsibility ; having an unplanned pregnancy or desire to abort the child ; participating in celebrations or social gatherings ; that the mother "doesn't care" about the baby ; and depression . Though only a few women mentioned not knowing that they were pregnant as a direct response to this question, it did emerge as a theme when discussing their own alcohol use behavior during pregnancy . Overall, with the exception of drinking because of celebrations or social gatherings, the reasons women gave as to why women drink during pregnancy tended to carry negative connotations in that women are seen as distressed or neglectful of the child . The women also provided similar reasons that nonpregnant women like themselves drank ; however, they more frequently mentioned drinking socially with friends, at social gatherings, or at celebrations as reasons for drinking alcohol . The participants overwhelmingly described the health and safety of the baby as the main reason women would not drink during pregnancy . Individual women frequently mentioned birth defects, miscarriage, or general harm to the fetus that could occur and felt that it was not worth the risk to drink. Participants in many groups also mentioned social pressure as a reason to refrain from alcohol use, but descriptions of these pressures differed by race/ethnicity. In 2 groups of White women and 2 mixed-race groups, women described these pressures as perceived judgments of a pregnant woman who is drinking as being irresponsible and an unfit mother, judgments that came from society at large or from family and friends. Women in 4 Hispanic and 3 Black/African American groups described social pressures more in terms of advice and support from family or close friends. --- Social Influences and Related Strategies The next section of the discussions focused more specifically on the social pressures that women face when it comes to alcohol use during pregnancy . A woman's partner, her family, and her friends all could act either as strong supporters of the woman's efforts not to drink or as negative influences by pressuring them to drink. In the 17 groups that discussed whether people they spent time with drink, almost all participants had at least some people in their lives who drink alcohol. In fact, many of the women indicated that most or all of the adults around them drink. These alcohol drinkers included close and extended family members, friends, and the women's own partners. In 6 of the groups, at least one participant reported having a family member who is an alcoholic. Beyond direct social pressure, the alcohol use behaviors of a woman's partner, family, and friends could play a major role in women's drinking by providing them with exposure to alcohol and modeling of alcohol use. Partners' Views-Generally, participants indicated that their partners shared their belief that they should not drink while pregnant . However, some participants had partners who drank around them while they were pregnant and encouraged them to be around others who were drinking. In 2 of the Hispanic groups of women who had recently had a baby, a few women indicated that their partner encouraged them to drink as well. More commonly, participants described ways that their partner discouraged them from drinking alcohol while pregnant , including reinforcing their decision to not drink during pregnancy, not drinking heavily around them, not bringing alcohol into the house, not bringing alcohol around their pregnant partner, and leaving situations where others were drinking if the woman felt uncomfortable. Family and Friends-Discussion of family members' influence revealed support of abstinence during pregnancy for some women in 10 of the groups, but other women focused on negative family influences. In a couple of groups, women described a family member who drank heavily during pregnancy. In other instances, women indicated that a family member had either encouraged them or someone else to drink while pregnant. In 4 groups, participants talked about older relatives who thought it was acceptable to drink while pregnant. These older relatives may have drunk while pregnant, did not see it harm their children, and saw their personal experiences as evidence that drinking does not harm unborn babies. Many of the 15 groups that discussed their friends' views included discussions of how it depended on the individual; some friends would drink around them or support their drinking during pregnancy and others would discourage it. Women in 8 groups described friends who drank alcohol while pregnant. In some cases, women did not know their friends' opinions because neither they nor their friends had children yet. It appears that many of the women would not discuss their views on alcohol use during pregnancy with others unless a situation arose that prompted the discussion. Women who did discuss issues related to alcohol and pregnancy with others generally talked to friends and relatives who may have less experience with pregnancy than they do. These discussions particularly occurred if the women were concerned that their friend or relative could be harming their baby by drinking or other behavior, but in 6 of the groups participants described little success with such discussions. Responses to Offers of a Drink While Pregnant-To explore how women react to offers of alcohol when pregnant, the guide included questions on how they would respond if there was a chance they might be pregnant, while they were trying to get pregnant, or when they were actually pregnant. Probes used after the initial question focused on specific strategies described in other substance use prevention research: simply refusing the offer , avoiding or leaving situations where people were drinking, or providing explanations/excuses. 39 At least some of the women in 4 of the 6 groups who recently had a baby admitted that they had accepted an occasional drink while pregnant. A number of women in the other 14 groups admitted their willingness to drink until they found out for sure that they were pregnant. These women did not think it could "hurt anything," especially if done in moderation, and they wanted to have fun while they could. Those who said they might drink while pregnant noted that they were referring to small amounts of alcohol infrequently and not getting drunk or drinking shots of liquor. Other women indicated that they would not drink at all if there was even a chance they were pregnant. Much of the resultant discussion reinforced earlier points . Many participants indicated that they would simply say "no thanks" to offers of alcohol while pregnant, even before the moderator mentioned the refuse probe. Women also commonly agreed that they would feel comfortable avoiding or leaving situations where others were drinking heavily, especially because "drunk people can act stupid or dumb" or because they may become exposed to other dangers such as cigarette smoke. Other women would still go to a club or party because they did not want to miss out, but in those cases they may use other strategies to help them abstain, such as going with others who were not drinking or avoiding offers by "faking" drinking alcohol . Women found explaining that they were pregnant effective for turning down alcohol offers but not as useful early in pregnancy if they did not want others to know about their pregnancy yet. Other useful explanations or excuses included being on a diet, taking medication, not feeling well, and acting as a designated driver. --- Sources of Health Information and Related Messages The final section of discussion focused on women's sources of health information in general and information related to alcohol use and pregnancy more specifically, along with suggestions for important messages to communicate about alcohol and pregnancy for women like the participants . Women in the majority of the groups mentioned the Internet and their doctor as their major sources of health information. Both responses were mentioned in both locations and across the various subgroup segments . Women also used both doctors and the Internet as trusted sources of information on drinking alcohol during pregnancy. Other sources that provided general health information included magazines, books, family members and friends , television , and the pharmacist . Women additionally mentioned government agencies , the March of Dimes, public assistance programs , talk show hosts , and pregnant celebrities as trusted sources of information on alcohol use during pregnancy. Several participants mentioned using the Internet to confirm information received from their doctor or as a source for a second opinion. Participants who used the Internet as a main source of information used it for a number of reasons, including convenience, because they could get a large amount of information on a topic quickly, were looking up a sensitive topic, did not have time to go to a doctor, were trying to self-diagnose problems, or wanted to chat with people with similar conditions on message boards. The women visited various Web sites to obtain health information, including Google , WebMD , BabyCenter , Planned Parenthood , and blogs , along with other sites. The Role of the Health Provider-Although the participants in the focus groups viewed their health care providers as a trusted source of information, the information that health care providers provide regarding alcohol use and pregnancy appears limited. None of the women's providers linked potential risks to a fetus with the behavior of using alcohol while sexually active and not using contraception. Their providers instead focused on excessive alcohol use leading to higher risks of pregnancy or acquiring sexually transmitted diseases. Alternatively, providers simply told them, "Don't do it." Other women indicated that their providers asked about alcohol use, but if it was not a large amount, they did not discuss any other issues related to it. Even women who told their health care providers that they were trying to conceive did not get clear messages about abstaining from alcohol use. Only a few of the participants' providers mentioned eliminating or decreasing alcohol consumption while trying to conceive, and no participants stated that their provider discussed more indepth information on the potential effects of alcohol use when trying to get pregnant, although 2 women indicated they had received relevant brochures. Across all groups, messages that women received about alcohol use during pregnancy from their health care providers differed from woman to woman. The majority of the participants' providers usually told them not to drink during pregnancy. However, numerous participants described instances where their health care providers stated that it was okay to drink alcohol during pregnancy; usually these providers endorsed drinking wine in moderation. A number of women also indicated that their provider reassured them about their drinking alcohol early in pregnancy but urged the women to abstain from alcohol for the rest of the pregnancy. The mixed messages from their own or from different providers confused the participants and many of the women expressed a desire for medical providers to present more consistent messages to their patients on this issue. --- Important Messages to Communicate About Alcohol use and Pregnancy- The participants' experiences with limited and sometimes inconsistent information about alcohol use and pregnancy led them to suggest that women like themselves need to receive accurate and more extensive information. Some of the women stated that health care providers should be required to discuss the consequences of alcohol use during pregnancy with their patients who are trying to get pregnant or who are currently pregnant. The participants provided varying suggestions for the content of the information from health care providers and other sources. Some participants preferred statistics about the number of women who drank during pregnancy and faced related consequences, along with more information on FAS. In several groups, participants suggested that messages should describe consequences for both the mother and the child, including how alcohol affects the mother's body and the likelihood the mother will have to take care of a special needs child for the rest of her life. Other participants preferred a personal story to help more people identify with and pay attention to the message; for example, showing a picture of a child with FAS and describing the story of his mother's alcohol use and the child's current life situation. Participants across various groups wanted to use graphic images and scare tactics to get women's attention. They thought that graphic pictures could be more effective by providing a firsthand look at the consequences of alcohol use during pregnancy. Many participants likened these to advertisements discouraging smoking, such as those showing discolored teeth. In addition to the content of messages, the women shared their preferences on where to place information about alcohol use during pregnancy. The most frequently mentioned channels included television along with schools and sex education classes . Other channels the women mentioned included the Internet in general ; social networking sites such as Facebook or MySpace ; ads on public transportation ; the radio ; billboards ; pregnancy books; and magazines. In addition, some women mentioned having alcohol and pregnancy related information available in locations such as at Lamaze classes , doctor's offices , Planned Parenthood , and through public assistance programs or in libraries, nail salons, liquor stores, bars, clubs, and public bathrooms . Community events and community organizations also appeared promising as channels for this information. One suggestion, of providing a related hotline number , could be incorporated into many of the other channels. --- DISCUSSION The focus group findings indicate that many of the women acknowledged the dangers of drinking alcohol during pregnancy and none endorsed drinking more than limited quantities of alcohol. These women already use multiple strategies to resist the temptation of alcohol, examples of which can be shared with other women. The discussions also shed more light on the most compelling reason for women to limit their alcohol use-namely, for the health of their babies. The Internet provides an important channel through which women can both learn about resistance/ refusal strategies and become motivated to limit their alcohol use, because many women now use it as a primary source of health information. Women's partners, family members, and friends do influence the women's attitudes and behaviors. However, they sometimes appear to lack accurate knowledge about the risks of alcohol use preconceptionally and during pregnancy to the point that they encourage women to drink during those times. Other troublesome findings include that the participating women continue to hold some misconceptions about alcohol use and pregnancy and, more serious, that a substantial number expressed willingness or intent to continue drinking alcohol regularly until they confirm that they are pregnant. Decisions to continue these behaviors may be influenced by the information women receive-or do not receive-from their health care providers. Participants indicated that their health care providers neglected to discuss the issue of alcohol use during the preconception period or during pregnancy and that some providers continue to endorse moderate alcohol use during pregnancy. The women expressed a desire for their health care providers to present them with consistent and clear messages regarding this issue. Though women did not mention health educators as a preferred source of information explicitly, they nevertheless can play a valuable role in providing women with accurate and more extensive information to fill this gap. Women view channels already used by health educators as important sources of accurate information, whether these channels consist of sex education classes, public assistance programs, or other social and community settings. As indicated in the Results section, there were relatively few consistent differences found between the audience segments . This was surprising especially considering some of the other demographic differences between the groups. Focus group participant responses often varied as much within groups as they did between the groups. Though this finding appears to weaken arguments for segmenting audiences in future studies, the segmenting process was valuable in encouraging the recruitment of a more demographically diverse sample than that used in many other studies. It also provides some assurance that messages and campaigns developed from this study may apply to broader target audiences of women. --- Limitations and Considerations for Further Research The findings of this qualitative focus group study are not meant to be generalizable; rather, they reflect the knowledge, attitudes, and beliefs of the women who participated in the focus groups. Participants in the focus groups appear generally more highly educated than women in that population on average. Higher education has been linked specifically to higher rates of alcohol use during pregnancy in some studies. 4,16,20,29,31 In addition, across the groups, most of the women reported drinking at least some alcohol in the prior 30 days and better represent women more at risk of alcohol use during pregnancy than women in the general population. Finally, having more than one group per segmentation block of race/ethnicity, age, and pregnancy status may have assured the capture of a fuller range of ideas and themes within each segment. Although the results include some overall descriptive comments about differences between the segments participating in the focus groups, these apparent differences may not represent women in those demographic groups as a whole. Further survey research with a sample of women across the relevant age, ethnic/racial, and pregnancy status groups could provide a better picture of the representativeness of the findings described above. Because of time limitations, the focus group guide and discussions focused more on alcohol and alcohol-related attitudes and behavior. Women who are not currently pregnant potentially face another major risk factor for AEP; that is, inconsistent, ineffective, or no use of contraception. This highlights the need for similar formative research to assess some of the themes not covered in these focus groups, such as issues about the effectiveness, benefits, and barriers of contraception use and pregnancy planning. This project uncovered other areas for further exploration. In particular, research with health care providers could shed light on reasons why they do not discuss the risks of alcohol use or continue to present information that confuses women and conflicts with governmental recommendations and recommendations from their own medical professional organizations 7,10 on abstinence from alcohol use during pregnancy. Research could also examine the effectiveness and reach of messages emanating from health care providers and those who develop health education programs. In addition, the types of graphic images proposed by focus group participants need to be compared with other prevention messages to assess which are more effective in changing alcohol use behaviors in these targeted populations. This work can also assess which messages, channels, and presentation formats best resonate with women of childbearing age. --- Translation to Health Education Practice This research has a number of implications for health education practice, especially for the revision of existing educational materials and the development of new materials and messages. First and foremost, it highlights the need for a comprehensive educational effort or campaign to target several audiences including different segments of women of childbearing age, various influencers , and health care providers. Based on the above findings, other considerations for the development of health education programs related to alcohol use prior to and during pregnancy include the following: --- • Provide clear and consistent messaging on alcohol use and pregnancy: -Continue to have messages accurately describe the negative outcomes of alcohol use during pregnancy, especially on the baby but also possibly on the mother. -Tailor messages according to women's pregnancy status . -Address common myths and misconceptions. Provide specific messages about the risk of all forms of alcohol use during all trimesters of pregnancy to refute messages women receive from their providers and others about the safety of red wine and other alcohol use later in pregnancy. -Articulate the risks of alcohol use while actively trying to conceive . -Provide women with alternate means of handling stress and social pressures that might lead them to drink when they are pregnant or trying to get pregnant. -Teach women strategies to help them resist pressures or offers of alcohol. • Social support strategies: -Target the partners, family members, and friends of women and encourage them to support women's decisions to abstain from alcohol use during pregnancy; emphasize the risks and clarify the misconceptions as described above. -Develop messages or use formats that encourage women to have conversations about alcohol and pregnancy and teach them how to discuss it with others in nonconfrontational ways. --- • Information and messaging for health care providers: -Encourage discussions about alcohol use and related risks as a standard element of preconception health counseling . -Supply health care providers with accurate, up-to-date information and tools that encourage discussion on this topic with all women of childbearing age. -Encourage health care providers to present a consistent message of abstinence from alcohol use for women who are pregnant or at risk of pregnancy. --- • Use/monitoring of electronic media: -Develop Internet-based messaging to reach women about the topic of alcohol use and pregnancy. -Monitor Web sites, blogs, and other places online where women go for their health information to make sure they see accurate messages about alcohol and pregnancy. Findings from this formative work provide important insights to health educators into how to develop appropriate, audience-centered messages and strategies. These findings also help inform the development of health education programs regarding alcohol use and pregnancy and emphasize the need to provide ongoing education about this issue for health care providers, along with women's partners, friends, and family members. Finally, health education approaches addressing the risks of alcohol use and pregnancy should include clear, consistent, and accurate messaging, utilize the Internet and community channels, and teach strategies for handling stresses and offers alongside more commonly provided information on AEP outcomes. The women preferred different types of content for these messages, from statistics and facts to personal stories to more graphic images demonstrating the consequences "Visually show a baby that has the alcohol syndrome, show how they're not able to thrive as much as a healthy baby. It's like you're giving your baby life but you're starting his life off on the wrong foot because already coming into the world having to battle stuff." [Atlanta, Hispanic, 18-24, trying/planning to get pregnant] Suggested message channels If you wanted more information on drinking during pregnancy, where would you go? In addition to health care providers, the women suggested multiple channels for information about alcohol and pregnancy including television, the Internet, and health education classes "I think they need to make it more like cigarettes. There's such a big campaign with the whole TRUTH, you see it on billboards, you see it on buses, you hear it on the radio, even on commercials where my kids are like I'm never going to touch a cigarette." [Chicago, Hispanic, 18 -24, recently had baby] Abbreviation: FAS, fetal alcohol syndrome. c In the past 30 days among those who had at least one drink over that time period. ---
Background-Women continue to drink alcohol during pregnancy despite Surgeon Generals' Advisory statements and educational efforts about the dangers. Purpose-This focus group research study examined women's knowledge and beliefs about alcohol consumption and its risks during pregnancy along with related perceptions of social influences and information sources in order to inform future messaging. Methods-The study included 20 focus groups of 149 reproductive-age women segmented by age, pregnancy status, and race/ethnicity. Results and Discussion-Women acknowledged the risks and consequences of drinking alcohol during pregnancy, but many held common misconceptions. Some women continued to drink during pregnancy or expressed intent to continue drinking until pregnancy confirmation. Findings indicated that women's partners, families, and friends influence women's decisions to drink or abstain from alcohol. In addition, health care providers and the Internet act as important sources of health information for women but sometimes do not adequately educate them about the risks of alcohol use and pregnancy.
Introduction: Children and their artwork Recently, anthropologists Smørholm and Simonsen argue that "children are the best informants on their own lives, and their abilities to interpret, express, and communicate their lived experiences should not be underestimated " . Cross-cultural and anthropological analyses also highlight some of the cultural specificities and patterns of children's drawing . Since the late 19 th century, an understanding of children's artwork has been a constant source of revelation and consequential difficulty facing educators, artists, and psychologists. In Germany and Hungary, children's art exhibits were mounted in 1897 and 1903 respectively . One of the first scholars to provide a highly original contribution to the field was the Norwegian educator and psychologist Helga Eng, whose 1926 study concerned her niece's drawings from the age of 10 months to 8 years, translated and published in English in 1931 . However, it was not until two decades later that the first trained Hungarian psychologist ventured to discuss drawings of school children: this was Julianna Sáray ), whose Ph.D. dissertation elevated the subject to a scholarly standard . Despite this century-long interest in the László Kürti | Traditiones drawings of children, the "discovery" of Roma visual art can be traced back to the 1970s, when paintings were shown to the public by journalists, ethnographers, and art historians . At that time, these were labeled "naïve artists" or "folk artists", since they often lacked formal artistic education and even proper schooling . The democratization of the international art world gradually opened the way for East European Roma artists, whose paintings are now regularly exhibited in European museums and galleries . While working with Roma children, one researcher found individual differences in the artwork, and not surprisingly, but somewhat stereotypically, she interpreted their drawings as polysemic projections of Roma children's inner conflicts anchored to their tendency to visualize often opposing feelings of fear and hope, aggression, and defensiveness . By viewing the artwork of Roma elementary school children in a rural town in Hungary, my aim is to understand how these youngsters' visual competency reflects their ideas and self-understanding about the various characters and elements of Christmas. 1 My initial idea was that, since it is the most commercialized and internationally mediatized holiday of the year, children would have no difficulty in depicting Christmas and its main protagonists -Santa, Rudolf, Christ, the Krampus, angel, the Christmas tree -or even the manger scene of the nativity play. As I intend to demonstrate, the results of this extra-curricular ethnography at home exercise proved otherwise, suggesting instead that some children had little knowledge of a Krampus image and were baffled by depicting reindeer, while others stressed their congenial family stories and relied on Roma religiosity in contributing their own memories or aspirations. --- Roma children beyond the classroom As is well known throughout Europe, Romani families have been ghettoized for most of their history and thus live apart from the majority of inhabitants of any towns in separate sections of settlements; the Roma in Hungary are no exception . National statistics suggest that some 10 percent of Hungary's population belong to the Roma minority, but only about one-third of them self-identify as Roma . Since the collapse of the communist state, opportunities for Roma families to secure paid work have decreased dramatically; since the 2010s, more than 50 percent of Roma men have been unemployed, and this figure rises to nearly 80 percent among Roma women . Their second-class status is further exacerbated by the meager social benefits provided by the state and the work-program assistance to which they are entitled. In "This Is Not Your Santa": Roma Children Visualize Christmas Traditiones | terms of educational advancement, data compiled by the EU present a distressing picture: "Only half of Roma children between the ages of 4 and 6 participate in early childhood education [...] on average, 18 percent of Roma aged between 6 and 24 attend an educational level lower than that corresponding to their age, and the share of Roma early school-leavers is disproportionately high compared with the general EU population" . Since the fall of communism in 1990, the number of private and religious schools has multiplied, but this by no means offers a viable solution to the majority-minority segregation affecting Roma children . These international statistics are even more obvious when viewed in tandem with national educational policy concerning the classification of school children with learning difficulties. As it turns out, about 30 percent of Roma pupils in Hungary have been classified by the educational system as children having difficulty with comprehension and learning, a figure roughly corresponding to the national average . All Roma children selected for the project also belonged to social categories with specific learning disorders and attention-deficit/hyperactivity disorder, or ADHD. These classifications, which Gábor Eröss calls "medicalization" and "psychologization" of "learning disabilities" and "behavioral disorders" , have unfailingly been linked not only to parents' lack of basic education, unemployed status, and extreme poverty on the fringes of Hungarian society but to the one-sided governmental educational policies . In contrast to such previous studies, I had the opportunity to continue my previous anthropological project "at home" by devising an ethnographic field project when the director of the community health center approached me to teach in an after-school voluntary educational program with Roma children in a medium-sized rural town of 11,000 people with roughly 10 percent of Roma inhabitants. 2 Since state schools are majority spaces considered by psychologists and critical educators to be limiting and frustrating for minority Roma children , it became imperative to try to distance children from the institutional school context by providing them with a real sense of autonomy or agency during the visual exercises. In contrast to Kuo, however, who allowed Roma children in a Romanian town to improvise and draw freely (Kuo, 2 I have been conducting fieldwork among local Roma since early 2000. As usual in data collecting, I started with the elderly, and continued with their offspring; those children twenty years ago now are all adults with their own families. I was fortunate because many of the families live only a few hundred meters from my house, and thus daily contact was assured. I conducted interviews, photo-elicitation, and video documentaries often returning to the same families for more data and clarification of personal histories, concepts, and more. I have not, however, included those Roma who settled in the town recently, only arriving from Romania since joining the EU. --- László Kürti --- | Traditiones 2015, 2020), I selected a more culturally specific and informal premise by focusing on a single theme, the Christmas holiday. Since this was a European Union-funded limited-scope project at the end of 2021, young social workers of the community health compound volunteered, for a modest commission, to work with Roma children as part of their regular jobs. 3 None of the social workers involved with the project belonged to the Roma minority however; indeed, there were no Roma educators available in the town or even in the nearby city, even though the social workers were determined to include at least one. When I volunteered to join the educators, I immediately realized the daunting task of working with Roma children whose parents did not fully wish to participate in the project. Unequivocally, Roma parents take their children home immediately after the end of classes, resulting in almost 90 percent of Roma children missing special and voluntary educational activities offered by the school. One reason for this has to do with the ubiquitous racism and anti-Roma attitudes widespread not only in segregated schools in Hungary as elsewhere in Europe but on the streets, in the labor market and social services, and in the media . Unfortunately, this action not only hinders children's educational advancement and opportunity to learn special skills but also further aggravates strained majority-minority relations while, at the same time, reinforcing greater ghettoization. Local Roma leaders not only seem disinterested but also eschew direct involvement in school politics, perhaps because of their traditionally divided kinship structure that favors extended family relations rather than the neighborhood or larger ethnonational bonding, in addition to the "double bind" phenomenon -stereotyped popular images and governmental ethnicization of Roma that offer no alternative understandings of Roma identity, described by Peter Vermeersch with regard to dysfunctional national Roma political representation . Even the special after-school educational programs initiated by various humanitarian NGOs in Hungary, so prevalent during the 1990s and early years of 2000 and described by Timmer , never took root in the countryside or in the town itself. With regard to the two months-long after-school art project, only those pupils and their parents were selected to take part who willingly expressed their participation in the project. Initially, thirty children between the ages of eight and fourteen were admitted, but after the first two weeks, all eighth graders left the project. By the beginning of December, attendance dropped to twenty-two children, most of them between the ages of eight and twelve. For the project, we were able to use the local Roma community center, a building that had been reconstructed with European Union financing. My co-workers and I especially welcomed the availability of the building as the spacious room and onsite technical support made our task easy. For my part, I decided against smartphones -about a third of the twelve-to-thirteen-year-old children possessed them -mainly because the children used them in their free time to listen to music, chat with their friends, and view Tik-Tok clips. 4 After my insistence on this point during the initial classes, this project gained acceptance by the Roma pupils who were willing and eager to become partners in cheerful and entertaining exercises. Like Roma children elsewhere in Europe, for example in Turkey , England , Spain , and Romania , Hungarian children receive elementary school education; visual learning and drawing, in particular, were not novel to Hungarian Roma pupils in the project; they had already learned to draw in school, many in kindergarten, which considerably strengthened manual dexterity, creativity, and drawing skills. There is an important proviso: in Hungarian elementary schools, specialized sports or art classes are offered mostly after regular classes in the afternoon, a time when most Roma children have already been picked up by their mothers and taken home. No doubt most enjoyed this new artistic opportunity to express themselves freely in any way they wished by using as many kinds of tools, colors, and subjects as they wished. Roma children felt relaxed and enjoyed themselves throughout the afternoon session. The noise level was high at first, but, as the project progressed, the children became more reserved, paying attention to the assignment. I selected the Christmas holiday season as a topic because we started in November and followed in the first half of December but, more importantly, I felt that a more focused approach would challenge and require them to channel their ideas and cultural associations of their lives around a single theme. --- Roma children begin to draw… I devised exercises according to age and gender composition, starting with general discussions about the holiday season, St. Nicholas Day , and following up with clips and short films, music, and stories about Christmas. In the wake of post-1990 Americanization, globalization, and fully entering the global capitalist market and international commercial culture, in Hungary, the two holidays slowly merged into a single three-week holiday season . I explained that the idea was for them to express themselves freely with images and concepts that come to mind. I decided to exclude selfies and photos, fetish objects children tend to overuse. I suggested that --- László Kürti --- | Traditiones drawing was less labor-intensive than painting; children could sit around four large tables freely and select any type of material -graphite pencils, crayons, and pens. They were also happy with the freedom to use as many A4 papers as they wished, together with erasers. My experience was that most of the children simply discarded the first attempts they did not like or in which they considered images to be inadequate or aesthetically unacceptable. 5As it turned out, to depict their own images of the holiday season was an entirely new idea to them. Smaller children were less certain, as one eight-year-old girl asked: "How can I draw Christmas?" Before I could answer, a boy slightly older offered help: "Just draw a Christmas tree or Santa Claus." Seeing their first attempts, and the discarded scribbles, I offered some ideas that they might draw. I listed figures of stereotypical images , objects , and actions associated with the holiday season . This turned out to be less helpful, as most children drew only a limited range of images, obviously what they perceived to be important. Those less sure of their artistic capabilities looked to their peers for ideas and help; only one ten-year-old boy drew Christian religious objects, such as a cross, shepherd's staff, and a crown -for him, non-anthropomorphic representation stood for spirituality and God Almighty. This is somewhat similar to the example of anthropomorphic and non-anthropomorphic representations in the drawings of Christian and Sunni Muslim children in Sweden . After about an hour, we collected the drawings from each child and continued with open-ended as well as semi-structured interviews focusing on selected drawings. About three-quarters of the drawings were set aside as doodling and unfinished attempts, or because children decided to scrap or destroy them . Their answers to our questions were grouped with the main types of drawings: Santa Claus, angels, Christmas tree, reindeer, Krampus, and related religious objects, resulting in about 100 drawings by the end of the project. At the initial stage, younger children were interested only in scribbling just for sensory enjoyment and the independence of playful hand movements. It was for many a free exercise, an emotional release especially since, in the classrooms, they are restricted by their teachers and the subject matter. It also became clear to me that the older ones, those between the ages of thirteen and fourteen, were less enthusiastic about drawing. While some children needed coaching because they were unsure of how to begin, others relied on help. Giving praise and encouraging their ideas to be put on paper, my co-workers and I noticed that the process facilitated increasing social interaction among pupils who were timid at first. Even though they knew each other -they were from the same minority community, some even relatives, and many came from the same school classes -the exercise presented new challenges. The first spontaneous drawings were made with playful lines and chaotic scrawls. Sometimes Santa's face was represented with unsure contours and indifferent proportions -for example, eyes only indicated by dots, with missing body parts, such as ears. I asked a girl if she saw this as a problem, and her answer was plain: "Ears are not important, Santa knows everything." I should note, however, that aside from the positive images of Christmas figures, Santa's mischievous associate, the Krampus, morphed early on into his original devil-like personage, the opposite of an angel, an enduring image association based on Christian Apocrypha. In fact, 19 th -century German-Austrian Christmas postcards clearly identify the Krampus as the devil . Oddly, for Roma children, Krampus possesses even more lurid stylistic characteristics fashioned after horror images taken from films and television cartoons. Quite extraordinarily, the Roma Krampus' mask-like faces parallel those used in recent Austrian wild Krampus revivals, unique Christmas holiday events with which Roma children clearly are not acquainted. When I asked one twelve-year-old about his fierce-looking Krampus, he was not shy about offering his impression: "The Krampus is not nice, he has big teeth, and he chases and terrifies children." For the smaller children, below age twelve, representing Krampus was an enigma, and when I carefully guided them about the role of the Krampus, one boy , said: "I know, he is the Devil-Santa." Because of his self-assured and loud comment, several boys illustrated Krampus as holding a large military-style weapon and not, as was customary, a stick, a broom, or a bunch of small sticks . Rather like the classic trident of Poseidon, boys -most of them like to present a fierce Krampus picture -depicted this dreaded folkloric figure as similar to an image shown to them in which the Krampus holds a three-pronged pitchfork. While four boys pictured Krampus with a three-pronged pitchfork, one boy drew it with a five-pronged fork. I asked him: "Your Krampus has a dangerous implement, no?" The boy's answer was stern: "He is a bad guy, maybe he could kill somebody." He seemed to be strongly under the influence of horror films and violent cartoons. Patrick's Krampus is perhaps the most frightening of all: his figure is a combination of a devilish animal and an extra-terrestrial creature. Two of the boys of the same age did not bother to display whole Krampuses, only the frightening face; both artworks are mask-like headshots with enormous mouths revealing sharp fangs. --- The use of dimension, color, and context I tried to offer a few directions to some of the children, for example, to one girl of ten years of age who was drawing an unusually small Santa Claus compared to the other Santa images. To jump to an easy assessment seemed too obvious, as my co-workers and I hastily assumed that the pupil was introverted, withdrawn, and less communicative than her schoolmates. This closely approximates what one psychologist asserts: "small figures on a comparably large drawing paper suggest emotional closeness and a distant communication with the world" . Dimensionality, symmetry, and proportionality have created difficult questions for some of the children. In their drawings, the scale of extremities compared to the size of the body, or adding a small head to large hands or feet did not bother our young artists. As Nagy asserted more than a century ago -reinforced later by Sáray -"children below the age of 12 tend to draw in a smaller scale, smaller objects [...] in general, do not tend to [respect] scale and dimension" . In contrast, girls drew angels with enormous wings, and in two instances Santa was depicted with horrendous legs resembling tree stumps. Only one of the creators readily explained the reason: "Santa has to have strong feet since he has to go to so many places." In the children's minds, Santa is gender-specific, and he is always a man. There were some questions about the children's lack of use of different colors and tools . A sixth-grade boy relied exclusively on a graphite pencil, but slowly he progressed into a more polychromatic visualization, even venturing into coloring the angel's dress and hair. While not always obvious in the drawings, angels in their imagination represent positive feelings and trustworthiness, especially when compared to other supernatural beings . As many ethnographers, among them Fosztó , Rostás-Farkas , and Szuhay , have noted, Hungarian-speaking Roma children believe in the general Judeo-Christian opposition concerning the positive-negative duality of angels and the devil. Moreover, many Roma families in the local community we studied belong to or frequently attend services of new charismatic evangelical Churches . Naturally, Roma children use elements of their adult world as known by their parents and relatives, and couple those with their mediatized fantasies. A few angels stand out from the rest, as one of them is depicted with a saint's halo. Encouraged by this specificity I asked the girl to explain the reason for the halo, "An angel is a holy person", was the rational answer. Another girl created an angel, in a manner that resembled a bumble bee. "She has to fly", she commented on the image, "actually she is flying right now", a reason why the angel's body was tilting to the right with blue clouds around her. For the children, as it turned out, angels are gender-specific, they are always female and all of them, including the boys, justified their belief that angels can fly and have long hair. Children in this project refrained from using multiple colors, a pattern that has not been observed as typical of adult Roma artists especially painters . For instance, János Balázs ), one of the first nationally recognized Roma painters in Hungary, has often been hailed by art critics as a maverick of "luxurious colors" . Paintings of the well-known artist Márta Bada , to use another example, have been associated with rich color schemes . One art critic describes her art as "instinctual" in which there is "an orgy of colors, just like emotions are brimming in the soul of children" . This may be part of the general dichotomy of "us" and "them", resulting in centuries-long exoticization and racialization of the Roma as many scholars have suggested . But in the artwork of children, simple colors send powerful messages. This can easily be witnessed, for instance, in the eight selected images of Krampuses, all monochromatic with only two exceptions. One Krampus has five rather subdued colors ; another is completely green with brown contours. The monochromatic dominance may be due to their age and the lack of art education; but for the child what the image represented was secondary to the narratives attached to it, as Sáray noted almost a century ago . Strange as it may seem at first, one of the most revealing aspects of the drawings is the lack of a larger holiday context, a commercialized and highly internationalized event in Hungary today . All the drawings seem to stand isolated without depicting a more contextual approach to the Christmas holiday. It was quite apparent that even though the exercise was clearly about Christmas in a generally wintry landscape, depicting snow or a snowman never occurred to them. The lack of animals in the drawings was also a surprising discovery. Whether this was related to the idea proposed by Caroll and Ryan-Wenger that most children express fear and anxiety about depicting animals remains to be assessed through more rigorous and specific studies. Of all the possibilities, children mostly drew angels, a Christmas tree, Santa Claus, and Krampus. Only two sisters ventured to draw a single reindeer. The centrality of the angel, Santa, and Krampus is not without justification for these are the most talked about and depicted figures of the Christmas pantheon in Hungary. To the children, Krampus has been identified as a masculine imp, a negative sidekick of Santa, as per his popularized image in nineteenth-century Central European media, and boys were more likely than girls to depict him. By contrast, girls eagerly drew angels. A lonely Christmas tree, plain without gifts and few decorations, is a sight not readily associated with the holiday. Many children decided to draw Christmas trees. Only rarely did they put a candle or ornaments on the tree. There was one proviso: Christmas trees were always decorated by either the parents or older siblings. When I asked if they ever helped or wanted to help decorate the tree, they were immediately defensive: parents should decorate Christmas trees in secret without children knowing anything about it. One older boy even admitted that they never bought Christmas trees but used the nearby forest to retrieve one for themselves, a constant source of tension between the farmer and the Roma families. One boy of 10 even drew a large box on a single piece of paper. Surprised, I inquired about its meaning, and he answered simply that it is a box full of Christmas gifts he will receive from his parents. However, wrapped boxes illustrating gifts and the process of gift-giving were very few, and when I asked, most Roma children did share their wishes about the gifts they wanted under the Christmas tree. To my surprise, the difference between their expectations and the visual narratives was quite revealing as they knew from previous experiences that their parents would not be able to fulfill their wishes. Most of the Roma children talked about receiving plenty of gifts only as an ideal situation but not as a reality, as their few drawings of holiday objects revealed. A rather curious aspect of Roma Christmas drawings was the lack of self-representation as well as that of other people, parents, relatives, or friends. Sequential narrative images were missing as well, except for one important note: in their minds, stories connected to the images were not without people. A twelve-year-old boy commented: "We will have a tree with many lights on it and it is lit day and night. We do nothing else with it, though. I drew the tree alone. We are not part of the tree." When I argued further with him and tried to convince him that the holiday is nothing without the people who make it a holiday, he replied: "The Christmas tree makes Christmas. By the way, this is my Christmas, not yours." After the second or third class, I was able to meet the boy's mother and showed her some of the drawings her son had made. Her smile revealed she was happy with all of them. I asked her about the lonely Christmas tree and hinted at the family unit during the holiday season. She confessed that she lives in her unmarried brother's household and that her husband had left her a few years earlier. She is the head of the household, raising her two children alone. Single-parent or non-conforming families among the Roma are the rule, not the exception, a structural constraint that exacerbates Roma pupils' disadvantages and segregation in learning and school performance . --- Images, meanings, and explanations I would also emphasize the discursive qualities and manifold meanings attached to drawings in subsequent discussions with children as I asked them to evaluate each other's artwork. Apart from criticizing each other's drawings -"It's a bad Santa", or "Angels don't look like that" were some of the printable comments -it became quite clear that they easily offered offensive and blunt criticism. Viewing each other's work gave them a free pass to make judgmental statements such as "Oh, you don't know how to draw", and "Why don't you go to school to learn how to draw". Responses were equally dismissive: "Don't worry about my skill, look at your Christmas tree, it's really awful", or "Your devil/Krampus looks like your father." Some children drew figures of different sizes that made me wonder whether this was attributable to their being children, their minority status, or other factors. To illustrate this point, I adduce segments from my conversations with the children, starting with a girl of twelve, which speaks about her feelings about drawing an angel: Q: Why did you draw the Angel? A: Because she brings presents. Q: Is she a man or a woman? A: Of course, she is a woman, what else? She has long hair. Q: You drew her with long blond hair, why? A: Angels are beautiful, they have gold. Q: Gold? Could she have nice long dark hair, like yours? A: Impossible, angels are blond. Q: And so small? A: They're tiny, you can't see them, and big angels can't fly. Depiction of blond angels is an obvious stereotyped Christian image deeply ingrained in a Euro-American mentality, although it might also suggest hidden or "invisible" racism , but also internalized racism and self-denigration and the impossibility of living up to a majority aesthetics and body image. Throughout my conversations with the children, their ethnonym -Roma -was never voiced, and none of them ever uttered the phrase "I'm a Roma" : that identity seemed obvious to them albeit muted. Another similar Western pattern, that of Santa's reindeer, baffled Roma children as was the case with an eleven-yearold boy, whose grandfather was a well-known and respected musician in the town. The merging of Santa and the reindeer with Christmas was out of the question as our conversation reveals: --- Q: I suggested you could draw a scene showing how Santa brings gifts to children; you know like in the movies? A: They're so stupid. Q: Don't you think that it's a nice scene, with a sled, and reindeer? A: Movies, I said. Because angels are powerful, they do magic, they bring gifts, don't need anything, no sled, no reindeer. Another girl of the same age drew a very small animal, a single reindeer, a visual depiction I thought quite impetuous at first that made me ask her: Q: Your animal is very small. Why? A: It's not so small, it's just right. Q: But reindeer grow big. A: Yes, but smaller animals are easier to feed, they don't eat so much. An older boy even considered the depiction of reindeer a silly idea arguing with an example: as a special treat, two years earlier a horse-drawn buggy brought Santa Claus to his school! Religious thinking and superstition are detectable in the images children drew. A boy of nine decided to depict only objects, symbols associated with the holiday season, a shepherd's crook, a crown, and crosses. A quintessential part of Western Christmas mythology, that of the reindeer, presented a dilemma to Roma children. Clearly, commercialized Western images have not, or not yet, impacted them considerably, and in some cases not at all. Also, angels seem to be still very much within their grasp as supernatural beings who can say and do anything. These and previous extracts illustrate a real divide about how children visualize and rationalize, as opposed to the limited interpretations of an adult instructor. I had never considered that the size of an angel -an imaginary figure readily open to various perceptions -would and could really be a concern. Nativity scenes across Catholic Hungary reproduce angels as the same size as humans -renaissance or baroque little angels are smaller and childlike and represent a different school of artistic imagination; but clearly, mine was a standard Eurocentric adult rationalization that did not fit with the visualization of this Roma girl. The nativity scene and Christmas carols, two popular aspects of the holiday in Hungary, were simply not present in the minds of Roma children. As I happened to notice during Christmas nativity festivals, none of the families who gathered around the manger scene in the central part of the town were from the Roma community. As Scheffel and Mušinka have shown with regard to the situation of Slovak majority and minority relations, Roma families are often weary of, and even voluntarily distance themselves from "integrating strategies" devised by gadjos , whether school ceremonies, political remembrances, or even popular entertainments. Moreover, racism, poverty, and the existence of a different magic-religious worldview present considerable obstacles that impede their participation in mainstream popular culture. This attitude became evident in our project as Roma children seemed rather lackadaisical about Roman Catholic middle-class cultural elements and ideals. The latter dialogue was even more faithful to children's imagination. Since, in cartoons or children's movies, reindeer are depicted as being of normal size, I was expecting that, in the children's drawings, proportionality would matter somewhat. Yet the girl's argument presented a curious but rational reasoning as her knowledge of their neighbor's draught horse and a foal provided a realistic, albeit not straightforward answer: that it is better if reindeer are small because they need less food. What is even more astonishing is the fact that only a few Roma families in the community possessed horses, but in local folklore and imagination, owning a horse has been preserved as a precious symbolic resource. To picture Santa Claus, David drew a friendly and loveable head of Santa with the explanation that "The head is important", and continued smilingly, "he looks very much like my grandfather, he has a beard and always smiles." The smiling mouth for him was obviously the most important characteristic that he associated both with his grandfather and with Santa Claus. I met with the boy's mother who came at the end of the class to take David home and showed his artwork to her. She acknowledged it only László --- Kürti --- | Traditiones with a small nod, but when I said that she could take the drawing home she rejected my offer without an explanation. I asked her about the boy's grandfather and, to my surprise, she answered that the man had passed away two years earlier. This revelation suggested the contemporaneity of the boy's drawing: the memory of the recently deceased grandfather -actually, his smiling face and beard -in the boy's mind had become associated with the image of Santa Claus. Another Santa image recalled different associations in the young artist's mind. Here is an excerpt of a conversation with a nine-year-old Eva whose Santa Claus looked, to me, rather frightful: Obviously, an unpleasant olfactory sensation created an inimical image in her, resulting in a rather frightening-looking Santa Claus that she had re-considered. When I suggested to her that she could draw a Santa without a smell, she declined, "It's my Santa, I can draw him any which way I please." This stress on smell is an important interethnic marker as olfactory discrimination against Roma is pervasive among Hungarians. Most Hungarians hold an ethnocentric view that Roma can be recognized because of their distinct body odor. As the conversation with the other girl reveals, Roma have their own cultural association with odor. Q: Do you Another curiosity about depicting Santa has to do with his gift-giving. A ten-yearold child drew Santa Claus with two enormous bags on his back. The child answered my question: "Santa needs two bags because he has to bring so many gifts for us." An obvious wish fulfillment? Perhaps. For Edina, another ten-year-old, this was not an important issue. She related her Santa picture to me: "Santa is quite fat and old. He should watch his weight." Only a 13-year-old girl drew a Santa that more closely approximates the mediatized happy image of Santa, depicting a smiling figure holding a large bag in his left hand and a bell in his right hand, and dressed entirely in red. Her classmate, Vivienne, drew Santa differently with a large conical hat, rather like the wizard Minerva McGonagall in the Harry Potter series or the Wicked Witch of animated children's films. An 11-year-old boy's Santa had enormous feet and outstretched arms with the moon and stars visible above his head. I was rather curious and asked him about this: his answer was quite unexpected: "Santa is not a real person, he comes from the sky, from heaven." Another image of Santa, drawn by the eight-year-old Dalma, was quite unlike any other. Her Santa was pink with a pointed cap, and a long transparent beard, looking surprised. This image prompted me to ask her: Q: Your Santa is surprised! A: No, he is just happy. Can't you see? He is smiling. He is happy because Christmas break is here soon. Happiness seemed to be a dominant trope the girl wanted to depict, not only in Santa's face but even with some angels exuding this feeling, mostly depicted with open mouths. --- Conclusion Are there unique aspects in the ways in which Roma children visualize Christmas? As an anthropologist, I would argue that the foregoing introduction to Roma children's art yields a resoundingly affirmative response: Roma minority children read such phenomena in light of their own ghettoized/marginalized experience and imagery, interpreting Christmas as their own holiday through a unique prism of Roma cultural identity. The cultural influences on children and their perceptions of what they know and remember cannot be overemphasized in this regard . These conclusions corroborate John Berger's argument that "a drawing is an autobiographical record of one's discovery of an event -seen, remembered or imagined" . In using a visual anthropological methodology in this project, I am well aware that drawing is not a "magic tool", as Sondergaard and Reventlow put it in their analysis of disadvantaged Danish school children's artwork. Nor does it readily offer new information about their prejudiced, hidden, and disadvantaged lives, aspects of visual narratives that I have also experienced with regard to messages embedded in vintage postcards . Yet, it would be misleading to dismiss the visual exercise of Roma children as simple, one-sided, or even bland at first sight, especially compared to globally essentialized media-hyped and commercialized holiday images. Nonetheless, it is clear from the above images that such visualization is not without value or individuality. As I have noted, an internationalized Christmas holiday is domesticated or rendered familiar to them, as demonstrated by their unexpected explanations and rationalizations. Roma children attach minimal prestige and importance to receiving gifts, and instead rely on their own world of memory and mysticism generated by the spirit of holiday mythology. Despite the overwhelming influence and pressure of official state education, spiritual aspects of Christmas, a mainstay of Roman Catholic dogma and biblical narratives, seemed only superficially present for many children. They attached less importance to other aspects of popular American and West European László Kürti --- | Traditiones Christmas mythology, such as Santa's reindeer, and their ample verbal narratives attest to that. For as Tracy Smith has suggested earlier, Roma children's verbal skills far outweigh their reading-writing competency . These ideas together should compel anthropologists of education and visual anthropologists to work more closely together, instead of isolating children's activities into educational and visual aspects. Namely, there are plenty of benefits from both perspectives, not least of which is the possibility of gaining more useful information, as well as developing more enjoyable meaning-making activities, between adults and children . Perhaps children's drawings introduced here do not tell us what their subjects may know, what is hidden in their thoughts, or what outside "interventionist" educators or intellectuals would like to hear. It is possible that what children communicate to the observer is something more mundane: that they enjoyed themselves visualizing Christmas, spent a few hours with their peers in an environment outside the rigid school system, and were able to offer their own immediate visions of what the holiday is about. These visual images confirm what others have proposed: that children can and do feel enthusiastic and empowered about their cultural products . Moreover, by listening to their narratives of their own drawings, we may be better situated to disrupt conventional stereotyping and negative self-representation of Roma communities . Finally, the images these children created convey the sense that, for a special moment, the holiday and the Santa they represented were indeed theirs, not mine. --- László Kürti --- | Traditiones --- »To ni vaš Božiček«: romski otroci vizualizirajo božič Etnografsko raziskovanje otrok »po pouku« je potekalo na način »antropologije doma« in je obravnavalo romske otroke v srednje velikem podeželskem mestu z 11.000 prebivalci, od katerih je približno 10 % Romov. Ker so državne šole prostori večinskega prebivalstva, zanje pa psihologi in kritični pedagogi menijo, da so za manjšinske romske otroke omejujoči in frustrirajoči dejavnik, smo v raziskavi oblikovali fakultativni krožek risanja, da bi otroke oddaljili od institucionalnega šolskega konteksta in jim zagotovili pravi občutek avtonomije in lastne tvornosti. V nasprotju s predhodnimi študijami, v katerih je bilo otrokom dovoljeno improvizirati po mili volji, so v tem projektu otroci ustvarjali na izbrano temo -božič. Želeli smo, da se s svinčniki in barvicami svobodno izražajo s podobami in pojmi, ki jim pridejo na misel ob božiču. Otroci so seveda uporabljali elemente iz sveta odraslih, ki jih poznajo njihovi starši in sorodniki, ter jih povezovali s svojimi fantazijami. Toda bila so tudi presenečenja. Večina otrok se je namreč vzdržala uporabe več barv, kar je vzorec, ki bi ga opazili pri odraslih romskih umetnikih, posebej slikarjih. Tudi drugi elementi, povezani z božičnimi prazniki, ki jih širijo množični mediji, so bili večinoma odsotni, se je pa v otroških podobah pojavilo vraževerje. Z opazovanjem likovnega ustvarjanja obravnavanih osnovnošolcev smo želeli razumeti, kako v njihovih likovnih kompetencah odsevajo njihove predstave in razumevanje različnih likov in elementov božiča. Naša prvotna ideja je bila, da otroci ne bodo imeli težav pri upodabljanju božiča in njegovih glavnih junakov -Božička, Rudolfa, Kristusa, parklja, angela, božičnega drevesa in jaslic, saj gre za najbolj skomercializiran in mednarodno medijsko razširjen praznik v letu. Rezultati te zunajšolske etnografske domače vaje pa so pokazali drugačne rezultate, saj so razkrili, da nekateri otroci slabo poznajo podobo parklja, nekatere je zmedlo upodabljanje severnih jelenov, medtem ko so drugi poudarjali svoje družinske zgodbe in se pri opisovanju svojih spominov ali želja opirali na romsko religioznost. Otroci romske manjšine razumejo božič v luči lastnih getoiziranih/marginaliziranih izkušenj in podob ter si ga razlagajo kot svoj praznik skozi enkratno prizmo romske identitete.
By discussing visualizations of Christmas by Hungarian children, I integrate children's drawings and ideas about the holiday as they relate to education, authorship, and ways in which the Roma view the world. While images and figures of the traditional holiday appear as standard tropes, interpretations of the respective drawings provide insights into the children's perceptions of -and wishes and aspirations for Christmas. Their images highlight anthropologically challenging socio-economic, educational, and familial aspects of Roma culture.
Exposure to disasters, which can be defined as events causing significant disruption to a community beyond their capacity to cope , can have serious and long lasting effects on children. There is increasing evidence of the impact of trauma on academic achievement, classroom behaviour, and social and emotional development of children . According to a major US study, approximately one in four children are estimated to have experienced a traumatic event in childhood , with children from disadvantaged backgrounds at even greater risk . Schools play a major role in improving educational outcomes and mental health of children following trauma . However, few studies have specifically examined the impact of disasters on the wellbeing and learning capacity of students from underprivileged and displaced backgrounds. This study will examine the perceptions of school staff on the impact of the Hazelwood mine fire event on student and staff wellbeing, student learning and teaching practices. --- The Hazelwood Mine Fire Event On February 9, 2014, burning embers generated from nearby bushfires spotted into the open-cut brown coal mine in Morwell, Victoria, adjacent to the Hazelwood power station. Within hours this had sparked large fires in disused sections of the mine, resulting in thick plumes of smoke and ash covering the town of Morwell and surrounding neighbourhoods . Over the 45-day duration of the fires, levels of carbon monoxide and particulate matter less than 2.5 thousandths of a millimetre and small enough to be breathed into the lungs regularly exceeded EPA advised standards . Some local businesses, schools and other community services closed or relocated, while families and residents of Morwell and surrounding towns also relocated or endured the smoke and ash by wearing masks and remaining indoors . The duration and uncertain health implications of this event, coupled with the higher levels of disability and disadvantage of people within the town of Morwell, had the potential to increase the physical and psychological impacts of this event at the time and ongoing . The School Setting and Use of a Trauma-Informed Teaching Model The specialist independent secondary school that took part in this study is one that relocated as a result of the smoke event. The school caters for students aged 12 to 18 years who have stopped attending or been excluded from mainstream education because of traumatic, behavioural, emotional, learning and/or family and relationship challenges. Students at this school may have experienced multiple placements in foster care or residential care, may be from refugee backgrounds or living independently while gaining their education. The school uses a threetiered trauma-informed model developed by researchers at the University of Melbourne, Victoria, which focuses on enhancing students' stress regulation skills, repairing students' disrupted attachments, and increasing students' psychological resources to promote post-traumatic growth . To achieve these aims, the model addresses five domains, including: self-regulation of the body, including appropriate identification of emotions and behaviour in response to those emotions; relationships that encourage attachment and whole-school relationships; stamina to foster emotional intelligence and resilience; engagement of students in the learning process; and identification of the personal strengths and values of students . A recent pilot of the model at two different schools revealed that staff felt that the program had a positive impact on student wellbeing, achievement, behaviour and engagement, and expressed a willingness to continue using the model and maintain professional development of staff . This model has been adopted more widely in Australian schools. --- Review of the Relevant Literature Studies into the impact of traumatic events on schools and school staff have indicated that teachers experience uncertainty and emotional burden when working with children after trauma ). Teachers have expressed frustration and helplessness when providing support to students following incidents of loss and bereavement , while students themselves have reported dissatisfaction with the response of teachers following an experience of trauma or loss . A recent report by Hubbard alluded to developmental delay and anti-social behaviour among some children following the 2009 Black Saturday fires, and the need for programs to assist teachers to manage these issues in the classroom. Teachers and school staff have also been shown to have elevated levels of emotional distress and posttraumatic stress disorder following disasters . However, the bulk of trauma-related studies have been concerned with individually experienced events , rather than community-wide incidents, with even less research on the effects of disasters on students with additional learning, behavioural and emotional difficulties. People from disadvantaged communities and who are disabled are often the most heavily impacted and vulnerable to both the short-and long-term consequences of disasters. This can be due to a disproportionate number of disadvantaged individuals living in high-risk areas for disasters, their lacking economic resources and access to information , and their higher prevalence of chronic physical and mental health conditions . Children with disabilities have also been described as being at greater risk of posttraumatic stress and adverse outcomes due to greater loss and separation from caregivers, increased parental strain, intellectual difficulties and educational delay, complex support and health care needs, and greater physical and mobility issues . Exposure to trauma in childhood can also further exacerbate disadvantage and social exclusion , and psychiatric illness in adulthood. As a consequence, research with children from disadvantaged backgrounds is necessary to understand the impacts of disasters on those likely to experience the greatest negative outcomes and therefore most likely to benefit from additional support and targeted intervention. The daily contact between school staff and students means that staff are well placed to identify the negative impacts of disaster events on student learning and resilience, as well as impacts on teaching and staff wellbeing. Understanding the impacts of disasters on vulnerable children and those who support them is the critical first step in development of resources and programs designed to intervene and respond to the unique needs of these students and carers following disasters. To the authors' knowledge, this study will be the first to specifically examine the perceived impact and experiences of school staff in responding to disadvantaged students following exposure to a disaster event. This study will examine teacher and other school staff perspectives regarding the potential impact of the Hazelwood mine fire event on staff wellbeing and teaching, and student wellbeing and learning at a traumainformed specialist school evacuated as a result of the critical six-week event. During the past decade, growing awareness of the additional needs of students from disadvantaged and traumatised backgrounds in Australia has seen the development of traumainformed approaches in schools . Trauma-informed models recognise that dealing with traumatic stress of students promotes greater school attendance and classroom engagement among students . According to a trauma-informed approach, dealing with traumatic stress of students involves developing a safe and secure school environment for staff and students, replacing traditional disciplinary methods with strategies to reintegrate students back into the school community and limit re-traumatisation, encouraging skills for self-and co-regulation with peers, developing healthy social relationships with peers and teachers, providing development opportunities and training for staff, and improving links between school staff and mental health providers . However, as trauma-informed models continue to be developed, further research is warranted to evaluate and provide recommendations on their effectiveness in different contexts. An understanding of the views of staff from a traumainformed school will provide insights that should be generalized to mainstream schools regarding the utility of this approach following a community-wide critical event in creating a more supportive school environment for staff and students. --- Research Questions Drawing on the above review of the literature, the research questions for this study included: What was the impact of the Hazelwood mine fire event on student and teacher wellbeing at a specialist school?; What was the impact of the Hazelwood mine fire event on learning and teaching at a specialist school?; and Can a trauma-informed approach assist students and teachers at a specialist school during a disaster? --- Method --- Ethical Considerations Ethics approval was provided by the Monash University Human Research Ethics Committee and consent from the manager of the specialist school was obtained. Because of the small staffing complement at the school and the small number of schools in the impacted area, the name and location of the school are not being identified to protect the anonymity of participants. --- --- Measures A semi-structured interview schedule was developed by the researchers to assess the impact of the Hazelwood mine fire event on wellbeing and teaching at the specialist school. The interview schedule included open-ended questions to address the research questions of the study, including understanding the effect of the event on student and staff wellbeing, and learning and teaching at a trauma-informed school. The schedule consisted of two distinct sections. The first was intended to prompt recall of the event, and to promote discussion about the students and practices of the school . The second section was designed for participants to talk about the impact of the event on staff and student wellbeing, learning and work practices at the time of the event and currently . The overarching theme from the analysis centred on relocation of the school during the event, with subthemes ordered according to the different types of impacts reported by the participants, including: the impact on student wellbeing; the impact on student learning; the impact on staff wellbeing; the impact on teaching; use of the traumainformed model; and recommendations from the event. Example quotes to illustrate themes are included within each section. Interviews were conducted by trained postgraduate student researchers, at the school, during school time, and lasted between 30 to 60 min. School staff completed a consent form prior to completion of the interview. Interviews were recorded and the recordings transcribed by the student researchers. Transcripts were then returned to participants who were given the opportunity to review them, correct errors and provide additional information. No participant took up this opportunity to provide feedback. --- Procedures This study drew on an Interpretative Phenomenological Analysis approach , with the aim of exploring the experiences and significance of a disaster event among school staff at a specialist school. According to the procedure for IPA, transcripts were read and re-read by two of the authors , and themes and the connections between themes were identified and discussed between the two authors and with the remaining authors until consensus was reached. IPA was selected because it is a person-centred approach that seeks to understand and describe the subjective experiences of individuals through in-depth but flexible semistructured interview and comprehensive analysis. The data generated from the interviews was highly detailed and specific to the experience of relocation for staff and students at the specialist school. --- Results --- School Relocation As described earlier, the event led to the relocation of the school campuses. Initially, participants commented on how students attended their original school site for the first few days of the event before staff decided that the event could continue for some time and have a negative impact on staff and student health, so an alternative school location was needed. However, being a specialist school, participants described the challenge of relocating their cohort of students because they could not be relocated to a mainstream school and also could not be in close proximity to shops and other distractions. The process of finding an alternative venue was reported to take two weeks until staff settled on a sporting and recreation community hall located in a neighbouring town. While closure of the school as an alternative to relocation was discussed among staff, this was described as not being an option due to the vulnerability of students at the school. According to participants, relocation of the school to a site away from the event impacted their wellbeing and work practices, and students' wellbeing and learning in several ways, including reduced quality of teaching, poor student engagement, imposition of extra duties on staff, increased student anxiety and behavioural issues, and shortening of the school day. Each of these will be discussed in more detail in the following sections. The difficulties surrounding the relocation were summed up by one staff member: BSo it was either that or shut the school for the whole month and a half or what have you, and then lose kids literally, they don't come back sometimes or it takes another three months to find them all and reengage them…^. --- Impact on Student Wellbeing The event was reported to increase the physical and mental health vulnerabilities of students , and increase frustration, stress and violence in students' homes, while relocation of the school reduced students' sense of safety and security. The challenges faced by students in their home environments, students' exposure to the smoke and potential health impacts, and issues related to finding an appropriate and safe relocation site for students were particularly difficult for staff to manage. Issues also related to merging students from the junior and senior campuses together at the relocation site which led to conflict between the two groups, negative influences of the older students on the younger students, and other behavioural issues among students. These issues further increased the workload and anxiety of staff. One participant summarised the impacts of the relocation on students:. BSo we saw a little bit of aggression. We saw a drop in attendance. We saw students having the ability to exclude themselves and hide in places in the hall where we were unable to find them at times. Actually that was only one student. We had issues with the senior students and with the junior students not managing together. So some verbal altercations, a reasonable amount of work refusal, because there was too many people in the environment, in the big hall and it was all too overwhelming^. Another staff member added: BFrom the students' perspective, some of them responded rather adversely, that there was a change in the routine, some find a certain security in the routine of things, and it was obviously disrupted^. The impact of the event on the home lives of students was raised, with one participant commenting: BI know that for some kids there was an increase in violence at home, you could see the stress levels in the family go up^. The challenging home environments of some of the students were also commented on by another participant: B… there isn't enough blankets on the bed, there isn't quite enough food in the cupboards so it's the dip which made the dip bigger^. Other comments related to the positive implications of school relocation on student wellbeing, including that the relocation site was further from the mine, reducing student exposure to the smoke and the associated negative health implications, especially for those with known asthma and respiratory illnesses. Participants recognised that not all students were anxious or concerned at the time or following the event, and reflected that some students were resilient due to earlier exposure to adverse experiences, while others were more vulnerable based on these experiences. It was reportedly difficult for staff to separate the impact of the event on students from other co-occurring difficulties faced by the students. One participant stated that, BIt impacted some of the student's health. We do have quite a few students with asthma -that was a bit of an issue^. Another added, BOur kids are really resilient. You know I work with young people who have had 10 changes of addresses this year and it's only July and they just pick their gear up and go and they're the older kids. Younger ones, some of them had been in and out of different residential programs and foster care so they're, not that they're used to change but they sort of go with change^. A third staff member commented, B… we don't know what they are and, their life situation, you know, some of them wear the same pair of clothes for two weeks… before they get washed or any of those kinds of things, some of them come in absolutely ravenous and are very grateful for the food here every day so the impact… it's hard to know^. --- Impact on Student Learning Once a new setting was selected, issues related to creating a new school schedule, managing student behaviour, maintaining student learning, and engaging vulnerable students were identified by participants. Participants spoke about how it took two weeks for staff and students to settle into the new environment, including adjusting to the new, shorter school timetable due to students being bussed to and from the site daily, understanding how best to use the space of the new setting to promote learning, and chasing up students who had stopped attending school. Some participants indicated that the relocation would have impacted student learning regardless of the setting, with one participant noting that, BThe kids don't like change, this is where having to relocate was a huge impact on the kid's learning ability and their settlement, everything because they do not like change^. While the relocation was challenging, the new site had some positive aspects, such as use of a sports field oval for students and kitchen facilities for staff to continue providing breakfast and lunch provisions to students. The sports field oval was reported as having a positive impact in terms of increasing student's self-regulation and fostering relationships between students, with one participant noting, BWe did lots of physical activity because we had an oval so we adapted to being outside a little bit more… So there was always continual changes. It doesn't help sometimes, but it did help with the situation we had^. Relocation was reported to reduce school attendance by a third, resulting in greater staff to student ratios and increasing opportunities for one-on-one work between teachers and students. Despite increased opportunities for one-on-one instruction between staff and students, the relocation impacted student learning due to the shorter school days, poorly structured classrooms and greater distractions for students, and reduced access to resources, such as computers and the internet. The reduced access to resources resulted in some frustration for staff, but also changed the curriculum and opportunities for hands-on learning among the students, with one participant noting, B…the disruption to the curriculum was quite significant. I would argue that not a lot of learning occurred during that time^. Some students were reported as having withdrawn from school completely at the time; however, it was unclear whether this was due to the relocation, with one staff member commenting, B… I know that several students who started that term never came back, they sort of disappeared off the radar. I don't know what happened to them, whether they moved away…^. Although an impact on student education was recalled, some participants indicated that learning was maintained to an extent. B… the students still got an education, maybe not the best education that they would have had at our school but you can't help these things when you have had, you know, a crisis like that^. --- Impact on Staff Wellbeing Participants mentioned their own frustration and anxiety about the uncertain duration and implications of the event on staff wellbeing. It was difficult for staff to receive information because they were not told about meetings for school staff organised by the Country Fire Authority , with one participant noting, B… you were inadvertently left out of many groups so I'd go to one meeting and there'd not be a meeting again and I'd have to ring up and figure out that there has been a meeting…^. Communication with the Department of Education and Training was also reportedly difficult because the school is independent and therefore not under the control of the Victorian government. The time taken to move the school's resources to the new location and pack up at the end of each school week so that the relocation site could be used for sporting and other community events over the weekends also increased the frustration of staff. One interviewee commented, B… I was just sick of the back and forth, back and forth, I just wanted to be back at school, consistency and the routine, which I'm sure the students wanted the same…^. There were also comments about the potentially cumulative impact of trauma exposure on staff wellbeing and the wellbeing of their family due to previous bushfire exposure in the region, with one participant noting, B… it sort of made me scared, the orange shadow that you could see on the ground, the smell of the smoke, took me back to that time, that fire…^. Staff were required to attend the original school site before and after school hours during the relocation to collect and drop off school materials. This was reportedly difficult for staff because of the increasing demands on their time and the potential impact on their family, with one commenting, BWe had to sort of still continue with the day to day stuff and school … one of the school staff members at the time he had to relocate at the time as well so him, his partner and his two children had to move to his in-laws place so they shifted because they live very close^. There were also concerns about the immediate and long-term health complications of smoke exposure for staff and their families, including asthma and headaches, particularly for staff with existing health conditions that required them to stay away from the area during the event. One interviewee commented, B...I don't get asthma so I felt like I was going to be ok, but I did feel for the people who had asthma, for the staff members who you could tell it affected them…^. Replacement staff were then needed to be located by the school, increasing the pressure experienced by the remaining staff. However, participants reported on the resilience of staff during the event and commented that staff worked cooperatively and in the best interests of students. While there was a sense of striving to put student safety first, particularly because of their vulnerabilities, it was clear that the uncertain nature of the event and health implications resulted in increased staff anxiety. This was highlighted by one staff member: … staff worked really well together and held a strong united front. Which we always do but we really had to glue really well together so we could manage the situation. And it was really tiring because of the packing up and moving, and having like a transport roster and register. And there were phone calls going on about who's going on the bus where and it was a really strong coordinated approach that we were very glad was over by the time it was done. While teamwork and cooperation reduced the burden for some staff, for others, there was a question about the need for increased decision-making and consultation between school leadership and teachers, with one participant noting: … pretty much, they [school leadership] make a decision and … then they, as in our leaders, … they'll come to us as teachers and you know, we will sit down and talk about it, but… as the teachers, I don't think we had too much say, on… what was happening,… I don't think we had too much of a voice in that. --- Impact on Teaching It was Ba lot harder^, according to staff, to reportedly do their work because of the physical impacts of the event, the additional duties and pressures they experienced during the event, the disruption caused by the relocation, and the impact of student behaviour and wellbeing. The additional duties reported by participants included additional paperwork related to collecting and returning students each school day, phoning students and carers to notify them about the school's closure and relocation, managing student behaviour during and after school hours, and packing up the relocation site each week. Staff spoke about their anxiety regarding the Bcascading little minor hiccups^related to selecting the relocation site and bussing students to and from this location each school day. This was highlighted by one interviewee: … and all the little anxieties that come with busing people, how long do you wait, oh someone said they're on their way and they're on their phone and they'll be there in five minutes. You sit there… waiting for them to turn up or not..., and you get to the station and the train's delayed, so you phone someone and say 'look we're waiting for…'. Another interviewee made the following observations: Organising a transport schedule for these students was quite difficult as well because some students are on oneon-one programs so they are not ready to manage in a group and making sure we delivered an education to everyone even though the school was shut down. So the extra challenges included transporting a whole group of students out of the really structured, consistent type of environment that we provide at the school to a big hall and trying to maintain the same type of consistency when everything was different. --- The Trauma-Informed Model Participants spoke about the different processes of the school according to the trauma-informed model for managing student behaviour and enhancing student self-regulation and coping skills, and that they were able to capitalise on the existing model when responding to the mine fire event. One participant commented, B… with the demographics of the school, support at a fairly high level is an everyday, ongoing thing anyway, and I'd suspect it probably, you know, changed the focus of the support a little bit…^. Access to the site sports field oval, one-on-one support and teaching for students, consideration of the individualised needs and home circumstances of students, maintained school attendance and engagement, and focus on students' ability to cope were all strategies used by staff that could be linked to the pillars of the model . Only the last factor of the model was excluded. However, participants mentioned difficulties in applying aspects of the model due to relocation of the school. Some participants commented that the trauma-informed model did not translate in the new location, while others suggested that the support aspects of the model were useful in helping staff and students at the time. For example, participants reported that they worked hard to monitor student behaviour and maintain routines during the relocation period. The focus of the model on communication and debriefing between staff was also highly valued at the time. One participant noted, BWe have lots of different challenging behaviours that we had to manage and the way our school is set up so students are never unattended. There is always a teacher present at every moment of every day and then we were in this whole new environment^. --- Recommendations from the Event Participants spoke about what they learned from the event and would recommend to other schools impacted by similar events. There was an emphasis on having a system in place to contact students and families in an emergency , a system to notify students and families earlier of school closures and changes and to have a plan in place for a suitable alternative location in case of another disaster event. This was best summarised by one participant, BLook we have learnt quite a lot, its things, like simple things, like having student lists available from home you know, so you don't have to come in and get a student list to ring everyone and say, there's no school. Just the things, like making sure you have your laptop at home and things like that, just in case^. --- Discussion Overall, the Hazelwood mine fire event impacted the wellbeing and learning of students and the teaching and wellbeing of school staff. In terms of the impact on students and staff, school staff reported that students had heightened anxiety as a result of the relocation, there was disruption to school routines which impacted on the students' learning and increased staff workload, and the event reduced the school's capacity to deliver trauma-informed care to students. It was also suggested that the event increased disruption in the home environment, with students reporting to staff that there was an increase in frustration, stress and violence in the home. This finding is consistent with past trauma research that has shown wide-ranging effects on social, emotional and academic outcomes among children, including increased irritability and conflict within families . There were, however, positive reports regarding physical wellbeing, particularly being that the relocation reduced exposure to the pollution and potentially a reduction in the associated symptoms, such as coughs, asthma and anxiety, along with increased outdoor activities on the relocation site sports oval. While it was reported that the physical environment improved, the relocation negatively impacted students' emotional and social wellbeing, again through disruption of their regular routine. Part of the disruption to school routines was the result of merging the junior and senior students which reportedly led to student conflict and behavioural issues. From a broader perspective, staff highlighted that it was difficult to separate the impacts of the event and relocation from other co-occurring difficulties of students. These findings expand on previous research showing that students from disadvantaged backgrounds are at greater risk of being exposed to the negative complications of traumatic events . Interestingly, staff commented on how students' prior experiences of dealing with multiple challenges put them in good stead during this period. While the teachers in this study had similar experiences to those reported previously ), it might be argued that the response of staff was improved due to the nature of the school and their familiarity with trauma-informed care. Staff indicated in interviews that their awareness of the background of children gave them insight into how the students would respond to the disruption caused by the event and the course of action they should undertake. This heightened awareness was illustrated by discussion relating to the selection of the relocation site, which could not be in close proximity to other schools and shops, and awareness that relocation would disrupt the carefully developed school routines and impact student learning and sense of stability. The key issues associated with the relocation included the reported decrease in student attendance and risk of students' dropping out of school, shorter school days because of the time lost to transport students to the new school site each day, poorly structured classrooms and increased distractions for students, and reduced access to resources for teaching. From a staff perspective, this led to a greater need to manage student learning and behaviour, as well as considerable administrative time chasing up students who had stopped attending school. While these actions were seen as negative by participants and the demands of staff were considerable at this time, it is likely that their knowledge of the additional needs of their students and use of at least four of the five tenets of the trauma-informed model may have prepared them to respond to the event in a more optimal manner. Having said that, however, staff did indicate some limitations of the school's response, including lack of early preparation and school policy prior to such an event occurring, and limited decision making consultation with teaching staff. While the focus of the staff was on the wellbeing of students, it must be recognised that there was also a substantial impact upon staff wellbeing. Staff reported being adversely impacted by the event, and had concerns about the shortand long-term health implications of pollutant exposure for themselves and their family. Staff experienced frustration and anxiety about the uncertain duration of the event, and concerns regarding communication failures with local and state-level authorities. This is despite comments about the overall resilience of staff during the event, and the reported communication and debriefing which occurred among staff which were a highly valued aspect of the trauma-informed approach. Although it is likely that without the traumainformed practices of the school and high level of knowledge and training of staff that the school response would have been far worse following such an event, some lessons can be learnt from this study by all schools. --- Recommendations --- Adoption of Trauma-Informed Teaching more Broadly The major recommendation from this study relates to the adoption of trauma-informed approaches more broadly in educational settings. While the results of this study indicate that implementation of the trauma-informed practices was challenging in light of the relocation and associated disruption to the school routine, the model may have increased staff awareness of the importance of monitoring student behaviour and, where possible, maintaining stable routines, school engagement, and looking for opportunities to increase students' emotional and behavioural self-regulatory skills regardless of the setting . However, these models need to include clearer school policy and staff training for responding to community-wide disaster events, in addition to individually experienced trauma, to reduce the burden on teachers. Many of the concerns raised regarding appropriate implementation of the trauma-sensitive strategies could be mitigated through having a plan in place for a suitable alternative school location or locations in case of another disaster event. --- Specific Disaster Response Recommendations Related to this point, staff also made recommendations to other schools impacted by similar events. Having a system in place that can be accessed away from the school site to contact students and families in the event of an emergency or disaster was strongly recommended by staff. This could include key school personnel having access to school contact lists from their home or through secure online systems. In addition, schools should put in place a collective system to alert all families and students to school closures and provide updates earlier , as well as having a plan in place for communicating with other impacted schools and departments of education. Staff indicated that greater communication and support from wider school regulatory authorities and emergency response teams is needed for schools and families to maintain wellbeing and promote recovery following such events. --- Support for Parents and Families Results indicated that disruptive parent-child interactions increased during the event and therefore may have hindered the recovery of students and increased the burden of school staff. Therefore, related to the idea of coordinated crisis response teams and development of community-wide protocols, is the recommendation for parents and families to be better supported during critical events. This is particularly important for teachers and other school staff who as community members are potentially dealing with the same disaster response issues as their students . Furthermore, research has shown that even if not directly impacted, school staff can experience levels of secondary posttraumatic stress when working with traumatised youth . Arguably, staff working with children and families from disadvantaged and displaced backgrounds require greater support in this area. --- Limitations Findings from this study need to be viewed in light of the fact that the sample was drawn from one specialist school in Australia and the results are not necessarily reflective of the experiences of all school staff following traumatic experiences. In addition, the unique nature of this prolonged community-wide pollution event means that the issue of relocation may not be applicable to all disaster events in which schools are required to respond. Further research exploring the impact and response of trauma-informed schools to other disaster events is warranted. It would also be highly beneficial to explore the experiences of the entire school community, including students and families, and to further explore the contribution of parent distress on child outcomes. --- Conclusion It is clear that the specialist school staff faced considerable challenges in responding to the mine fire event and maintaining the school routines in a sub-optimal relocation site. This included challenges for staff to manage their own reactions and family instability during the event, to challenges associated with maintaining stable relationships and student engagement due to the event and subsequent relocation. While there were wellbeing and educational impacts reported for students and staff, the school's use of a trauma-informed approach to teaching provided considerable insights into how best to support students during this period. --- Compliance with Ethical Standards Disclosure of Potential Conflicts of Interest On behalf of all authors, the corresponding author states that there is no conflict of interest. Research involving Human Participants and/or Animals Details of the Monash University Human Research Ethics Committee approval and approval number are provided in the body of the article. --- Informed Consent We confirm that the ethical standard of informed consent was followed in all matters.
Children from disadvantaged backgrounds often experience high levels of traumatic stress, however, little is known about their experiences and the responses of their teachers following disasters. The aim of this study was to examine, from the perspective of teachers, the impact of a critical community-wide traumatic event on student and staff wellbeing, and student learning and teaching practices at a specialist school for disadvantaged and displaced youth in Australia. Eight school staff were interviewed, including administrative, teaching, and support personnel, with their responses interpreted using Interpretative Phenomenological Analysis. Results focused largely on the impact of the event and the resultant relocation of the school on staff and student health, reduced opportunities for learning, changes to teaching and student engagement, and the strengths and limitations of the trauma-informed approach of the school. Implications for teacher education and school trauma-informed models are discussed.
INTRODUCTION For more than 50 years, indigenous scholars have published research as agents of researching entities in colonised nations. More than that, those entities have created schools, institutes and programmes specifically dedicated to produce research outputs which recognise the distinct political and intellectual traditions of indigenous peoples . At one level such actions are framed by government and higher education policies as contributing to indigenous knowledge so as to improve the often parlous socio-economic, health and environmental circumstances of indigenous peoples . Often these initiatives can be seen as governmental and other political and economic responses to the political actions of the first organized modern indigenous movements in modern colonial states; including the First Nations, Métis and Inuit peoples of Canada; the Native American peoples of the United States; the M aori people of New Zealand; the Aboriginal and Torres Strait Islander peoples of Australia; and the Sami peoples of Norway, Finland, Sweden, and Russia. However, the incorporation of indigenous knowledge and the research of indigenous scholars into the "industrial actor-network of academic knowledge production, circulation and reception" raises fundamental questions of not only ownership of indigenous knowledge but also its acceptability, assessment, encouragement, ethics and representation in research quality evaluations and metrics . The present paper offers a perspective on these issues. --- INDIGENOUS KNOWLEDGES AND THEIR ASSESSMENT In seeking to understand indigenous scholarly research there is no ''view from nowhere'' since knowledge is always ''local, situated and embedded'' . Contemporary indigenous ways of researching demand that researchers are accountable , requiring them to consider what their researching hopes to achieve for people and the communities being researched . Researchers are obliged to create and maintain credibility and integrity when working within Indigenous communities; research cannot be about "simply rushing in and 'ripping off' communities in order to obtain personal credentials" . This guidance stems from a history of research which has been detrimental in many respects to Indigenous peoples . Recognition of how knowledge is produced, circulated and assessed is therefore fundamental to establishing its credibility, its beneficiaries and how it is read in different places . It is at the local level that research gets its audience and therefore, "its motivation, relevance, application and strength" . Indigenous knowledges are each reflected in their relatedness to specific milieu, culture and place but are becoming increasingly circulated and diffused within institutionalized national and international assessment systems that serve to assess the worthiness of indigenous knowledge as a world-view and as a subject for publication. Nevertheless, institutional norms and practices of Western universities often conflict with indigenous ways of researching . This is witnessed in various performance-based reward systems which have indigenous subjects within them, such as the Performance-based Research Funding Systems in Denmark, Sweden, Norway and Finland ; Australia's Excellence in Research for Australia exercise , and New Zealand's Performance Based Research Funding programme . However, to this could also be added the various forms of impact and quality assessments of individual publications, including as to whether publications are included in the "right" bibliometric database or not , and the related development of university and institutional rankings . Such systems of surveillance often have direct impacts on how and on what research is conducted and where it is published , with corresponding sets of incentives and disincentives to do so which affect not only individual research careers but also the capacity to voice different forms of indigenous knowledge and research practices . From an indigenous perspective, such a situation may only further reflect colonial knowledge relationships as the various institutional arrangements for assessing knowledge will frame the local knowledge of the colonised in relation to the knowledge and assessments of the coloniser . Indeed, in the case of the ERA it has been recognised that although the assessment of research quality using a combination of metrics focused on researchers, research outputs, research income, esteem and applied measures is quantifiable, it does not generally translate into measures valued by research end-users including, in the case of health research, indigenous Australians that "have been over-researched without corresponding improvements in their health" . The phenomenological relationship between the geographical contexts of being somewhere and knowledge acquisition reflects a concern not just with where things matter but also how and why they matter. We write from the perspective of academics currently working in New Zealand who have spent time in New Zealand, Australia, Canadian and Nordic universities. We have indigenous and non-indigenous ancestry and are engaged with indigenous and non-indigenous knowledges not only in terms of research but also research administration. Our concerns with indigenous knowledge assessment come therefore from seeking to understand how indigenous knowledges and research becomes incorporated in practices of consumption, production and marketization of the global circulation of knowledge in which it is assessed and subsequently reframed and returned to the local as part of new practices, for example the "world class" and "entrepreneurial university" , accreditation schemes, and the incorporation of cultural "competence" into higher education in order to "tick off the box" that students have acknowledged indigenous populations . Indeed, the notion of cultural "competence" has been substantially criticized, being regarded by some as a perpetuation of a racist knowledge paradigm because of the failure of broader social and economic systems to acknowledge indigenous world views . --- Liberal Exclusion of the Indigenous A history of liberal exclusion through processes of colonisation have brought about a sad and enduring period in indigenouscolonial relations. The first universities in colonised states were built on a solid foundation of liberal philosophy whereby universities sought their intellectual freedom and autonomy from political, social, and economic institutional forms. Simultaneously, they sought independence from long-standing indigenous institution intellectualisms, customs, knowledges, and languages; solid institutional forms in their own right. There was no room for indigenous theory, methodologies, analyses in the academy . This is far from a history which has ended. Forms of indigenous exclusion still exist . Potentially crucially for performance based funding reviews, "In the same way that indigenous peoples and their epistemes remained invisible when the nation-states were being shaped, indigenous scholarship remains invisible and unreflected in most academic discourses" . The underrepresentation of indigenous researchers in Western universities and other higher education institutes has serious consequences for building research environments which foster feelings of inclusion and for advancing research programmes where collegiality is operationalised as opposed to simply being a line in a policy document. In New Zealand, indigenous M aori faculty make up only 6% of the university academic workforce despite being 14.9% of the population in general . The situation is equally disturbing in the United States where Native American peoples make up only 0.5% of the academic faculty in higher education despite comprising roughly 2% of the population . Likely the product of adverse academic experiences for indigenous peoples, such underrepresentation is unsurprising given the inequities faced by indigenous faculty who often have a different occupation shape and career trajectory to their peers , are more likely to witness or experience discrimination , are much less likely to be on permanent contracts, and who have much shorter careers than other researchers in the ethnic majority , who experience hurtful public censures from non-indigenous academics , and who face identity related tokenism and exclusion . Such feelings and experiences can have devastating impacts on indigenous faculty trying to prove their worth in colonial institutions pushing neoliberal agendas of excellence. As such, indigenous faculty "report intellectual and emotional isolation and loneliness in research institutions" , face situations "loaded with the deck stacked against them" , and have their identities questioned when they straddle two or more worlds . --- M AORI AND THE PERFORMANCE BASED RESEARCH FUND The New Zealand PBRF government initiative, first run in 2003 to assess the quality of academic research in degree-granting organisations, has been blamed for creating barriers to research for indigenous M aori academics and associated methodologies and worldviews and, in turn, causing a decrease in the numbers of M aori researching academics. Prominent indigenous professor, Linda Tuhiwai Smith made the observation that in 2003, 599 indigenous M aori academics submitted research portfolios to the PBRF and by 2012 that number had halved to 290 . The most recent results in 2018 also reveal "a lag in the number of M aori. . . researchers participating in the PBRF." , 2019a: 36). The PBRF assessment has led to a strong focus on various metrics such as the number and quality of publications produced by academics. The significance of numbers and relative subject ranking is also reflected in the promotion by universities of how they have performed in the PBRF exercise. However, as Kauppi has recognized, as a highly objectified form of knowledge, data has a material force of its own, and gives the impression of providing access to a more profound level of reality and subsequently "it influences, with varying impact, actors' behavioral patterns". --- Neoliberalism and the Economization of the PBRF The development of performance assessments, such as PBRF, reflects that New Zealand higher education has entered a period of neoliberal exploitation which, far from succeeding the liberal tradition, has simply added to pre-existing university managerialism. A result of which is that universities have been increasingly driven by a corporate business logic enabled through market mechanisms obsessed with achieving diversity quotas and crafting equity agendas that can be included in government reporting. In the case of the development of performance based funding this has led to a process of economization-the assembly of actions, behaviors, devices, institutions, objects and analytical/practical descriptions which are tentatively and sometime controversially qualified as 'economic' by scholars, lay people, government actors and/or market actors . In the case of the PBRF such measures are primarily assessed at the level of the submitted individual performance, with the results later amalgamated for the purpose of institutional funding; a utilitarian action and framing of the research process, which in itself is in opposition to indigenous notions of the collective and communitarian nature of research . Nevertheless, the PBRF sets the rules of the research game in New Zealand . The implications of which are driven down to the individual career level via human resource management and reward systems. The imposition of the rules of the game, "the rules used to calculate decisions", as Callon observed, are used as "the starting point of relationships of domination which allow certain calculating agencies to decide the location and distribution of surpluses. The extension of a certain form of organized market, an extension which ensures the domination of agents who calculate according to the prevailing rules of that particular market, always corresponds to the imposition of certain calculating tools." In New Zealand the early neoliberalism of the 1980s sought to reduce the role of government in the management of public sector institutions but was later replaced by government efforts to remodel the sector on neo-liberal, free-market private-sector management principles . As a result, with the 1990s came significant changes to the higher education sector recognising indigenous tertiary institutions making them eligible for state funding, the number of indigenous students graduating with tertiary degrees increased, and university charters were required to show how they were committing to the principles of New Zealand's founding document, the Treaty of Waitangi . This has meant that in the era of "post-colonialism" governments are relatively proactive at creating indigenous committees or appointing an indigenous academic to a panel to consider the fit. Indigenous peoples have created academic careers in the era of the neoliberal university , but, as a result of legislative and policy changes, the "inclusion" of indigenous faculty in processes to create, monitor and change the rules of assessing and promoting research performance are mostly tokenistic and performative . Under the PBRF, for example, there is a specific panel to address M aori Knowledge and Development which awarded funding to 174.87 Evidence Portfolios in 2018 as compared to 125.83 EPs in 2012. M aori researchers comprised 88.6% of those submitting to the MKD Panel in 2018, an increase from 74.5% in 2012 although, significantly for M aori research in the longer term, only 15.5% of researchers who submitted to MKP were aged under 40 . --- Empowering or Othering? From some perspectives the establishment of a separate panel to asses M aori research within the PBRF may be regarded as a positive . However, notions of empowerment can sometimes be more patronising than helpful and may not lead to any real transformation . Universities and the government's funding of excellence are caught up in the pursuit of being seen to address inequities and improve the numbers. But instead, just focusing on numbers arguably only serves to reinforce colonial logic. M aori research is put in a separate box-perhaps with the best of intentions-but such an approach does not really assist in "the development of power sharing processes, and the legitimation of diverse cultural epistemologies and cosmologies" . Instead, such binary practices may "perpetuate the ideology of cultural superiority that is fundamental to colonisation" by framing M aori research epistemologies as other in a manner that is, arguably, symptomatic of contemporary academic colonialism. Rather than empowering indigenous research voices to engage in a conversation with the wider academy and its epistemologies, the processes of academic surveillance and control that the PBRF represents, instead becomes a site for the continued dominance of Western world-views in the New Zealand academy and reproduces the current epistemological hegemony. Tawhai et al. in their critical reflections on the establishment of the PBRF system and, in particular ,the role of the government in determining its nature, highlight the poor levels of consultation with indigenous M aori which led to a system partially ignorant of indigenous research processes in its early stages. For example, consider the act of creating individual research portfolios and putting them forward for research quality evaluation. From an indigenous M aori perspective, such a task requires a considerable psychological character shift from one rooted primarily in a history of humility and modesty to one of arrogance and showing off . This is a salient issue often not recognized by nonindigenous scholars and assessment systems, with respect to what is being measured. Indigenous scholars who are lauded locally as carvers, weavers, performers and storytellers and who have learnt skills passed down over generations feel aggrieved to claim their work as their own, as in the case of PBRF evidence portfolio purposes, when their efforts and labor are to them absolutely inseparable from that of their ancestors, teachers, and elders regardless of the disciplinary panel into which they are categorized . --- CONCLUSION There is an urgent need for research performance based funding systems and their implications to be rethought from an indigenous perspective. The utilitarian model of such performance models do not meet the needs of indigenous researchers and their communities and those working within indigenous epistemologies, although it does meet the needs of the neoliberal university and higher education research governance. In a health context there has been substantial recognition of the need for new approaches to indigenous health, wellbeing and research. In New Zealand, Australia and Canada the notion of "cultural safety" has been promoted as a way of "shifting from deficit-based discourses and the associated individualizing of health concerns toward a recognition that larger processes of colonization, including the loss or attenuation of traditional beliefs, practices and language, need to be taken into account in any explanation of, and attempt to improve, health for Indigenous peoples" . Similarly, in a Southern higher education and epistemological context, Santos calls for "new kinds of theoretical, epistemological, organization, and pedagogical orientations," as part of the development of new ecologies of knowledge. What is now needed in the assessment of indigenous knowledge via performance based funding reviews is the development of a research evaluative concern with cultural safety that better recognizes not only indigenous worldviews and languages but also research practices, including forms of knowledge transfer and assessment that do not conform with some of the standard models of journal publishing and peer review, but which are no less relevant or valuable . This will require a framing of the value of indigenous episteme across the entire process and not just being placed in a separate category of research that only serves to reinforce otherness. Bainbridge et al. in commenting on the "elephant in the room" in terms of issues of research impact and benefit in Aboriginal and Torres Strait Islander health research observed that, "The research impact debate must take account of the various standards of accountability , impact priorities , positive and negative impacts, and biases that operate in describing impact and measuring benefit". We certainly agree with these assessments in the wider indigenous research assessment context but we would also add issues of who is doing the research? , how it is being undertaken? , and how it is being communicated? . In addition, we suggest that there is an urgent need for greater recognition of the consequences of research performance reviews on the careers of indigenous staff at higher education institutions given their current Western colonial bias with respect to notions of research excellence. --- DATA AVAILABILITY STATEMENT The original contributions presented in the study are included in the article/supplementary material, further inquiries can be directed to the corresponding author. --- --- Conflict of Interest: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Countries with significant indigenous populations, such as Australia, New Zealand and the Nordic countries, are providing increased support for improvements in the number of indigenous academics represented in higher education and engaged in research. Such developments have occurred at the same time as the implementation of performancebased research funding systems. However, despite the significance of such systems for academic careers and knowledge diffusion there has been relatively little consideration of the way within which they meet the needs of indigenous academics and knowledges. Drawing primarily on the New Zealand context, this perspective paper questions the positioning of M aori researchers and M aori research epistemologies (Kaupapa Maori) within the Performance Based Research Fund and the contemporary neoliberal higher education system. It is argued that the present system, rather than being genuinely inclusive, serves to reinforce the othering of M aori episteme and therefore perpetuates the hegemony of Western and colonial epistemologies and research structures. As such, there is a need to raise fundamental questions about the present ecologies of knowledge that performance based research systems create not only in the New Zealand higher education research context but also within other countries that seek to advance indigenous research.
Introduction A diverse physician workforce addresses healthcare disparity while improving patient outcomes and increasing satisfaction among patients. It fosters greater innovation in health care and facilitates the recruitment of minorities into clinical trials for better treatment solutions [1,2]. Diverse populations require personalized approaches to meet their healthcare needs. With an ever-increasing number of minority patients, more minority physicians are needed so that minority patients can choose to see physicians of their race [2]. Literature has shown that minority doctors are more likely to treat minority patients, who often live in underserved areas [1]. Racial concordance, by a diverse physician population, encourages physician understanding of the cultural, social, and economic factors that influence patients and can foster trust and communication [2]. Despite these advantages, the proportion of individuals belonging to racial/ethnic minority groups in health care is not comparable to their representation in the overall United States population. In 2019, the percentage of Black/African American, American Indian or Alaska Native, Native Hawaiian or other Pacific Islander, and Hispanic or Latino was more than about 33%, while these groups comprised approximately 12% of US medical school graduates in the same year [3]. The knowledge and understanding of serving individuals with diverse racial and ethnic backgrounds, different values, health beliefs, and alternative perspectives about health and wellness are crucial. Although healthcare systems have continued to diversify with an increased number of ethnic and racial employees, underrepresented minorities in medicine and women continue to face challenges regarding their propionate presentation within the healthcare workforce [4]. Healthcare systems heavily depend on female physicians, still, they discriminate against women and tend to concentrate female physicians to work in lower occupations globally [5,6]. On the other hand, race is a social construct introduced by the society and is not a biological construct that reflects innate differences [7]. Currently, 48% of medical students in the US are women whereas only 35% of the physician workforce is represented by women [8]. Women and URiM also struggle to progress to the leadership and senior faculty positions due to gender stereotypes and unconscious biases that plague women and URiM in medicine [9]. Women and URiM are underrepresented in medical leadership, they are given less funding than their counterparts for research/grants, and they are promoted at lower rates. They are more likely to experience implicit and explicit bias, reduced career flexibility, and isolation and exclusion from opportunities to advance in medical careers [9,10]. The racial, ethnic, and gender disparities in health care are known to limit access to care and the earlier onset of illness, more severe disease, and poor quality of care that arise from differing socioeconomic conditions as compared to their peers. Evidence suggests that even after such disparities are accounted for, race and ethnicity remain significant predictors of the quality of health care received [11]. Recent data suggest that although 38.7% of the US population consists of racial and ethnic minorities, African Americans, Hispanics/Latino, and Native Americans make up only 4%, 4%, and <0.04% of medical doctors, respectively [12]. According to the American Medical Association , the number of female pediatric residents has gradually increased , but ethnic minority races recruitment among all specialties especially pediatrics continues to be low as compared to their representation in the general population [13]. Many studies have been done in recent years to analyze the recruitment of URiM in pediatric residency programs [14,15]. However, in this study, we explored the trends of recruitment of residents not only according to race but also the percentage of women in the US pediatric residency programs from 2007-2008 to 2020-2021. The primary objective of this study is to help the policymakers understand the longitudinal trends, thereby enabling them to address these disparities through evidence-based strategy. --- Materials And Methods We retrospectively analyzed the data extracted from the annual Accreditation Council for Graduate Medical Education Data Resource Books from 2007 to 2021 [16]. --- Variables For pediatric residency training programs, demographic data of residents were extracted. Race/ethnicity was categorized as self-reported White/non-Hispanic, Asian/Pacific Islander, Hispanic, Black/non-Hispanic, Native American/Alaskan, others, and unknown. The Asian category was separated from the Pacific Islander category in the 2018-2019 ACGME Resource Book. Asian and Hawaiian Native/Pacific Islander have a separate category from 2019-2021 ACGME Data Resource Book. However, for the purpose of analysis, they have been combined in our research. According to the ACGME Data Resource Books, "Unknown" ethnicity includes both unknown and blank, while "Other" indicates a known ethnicity other than the ones available for selection [16]. Gender was grouped into male, female, and not reported. --- Data analysis We analyzed the data by gender and racial distributions and its temporal trend by year and across the specialty of pediatrics. Absolute and relative percentage changes were calculated to highlight trends in resident appointments over time and across specialties; absolute change is the actual difference in the total number of residents from 2007 to 2021 and 2010 to 2021 and relative change is the change in pediatric residents relative to 2007 in case of gender and 2010 in case of race. Although data for gender distribution were available for all years , race/ethnicity was reported starting from the year 2011. --- Results --- Distribution of race/ethnicity in pediatric residents and its temporal trends From 2011 to 2021, the racial/ethnic trends in US pediatric residents showed an increase for White , Asian or Pacific Islander, Black , Hispanic race, and others . The greatest increase in relative change was seen for Asian/Pacific Islander , Black , followed by White and Hispanic pediatric residents. However, Native American/Alaskan pediatric residents relatively decreased by 50% simultaneously. The data are self-reported. "+" denotes increase and "-" denotes decrease. --- Gender comparison of pediatric residents and its temporal trends The representation of women increased in pediatric residency from 2007 to 2021. There was an absolute increase of 8.32% and a relative increase of 13.27% for women pediatric residents from 2007 to 2021 . A simultaneous increase was also observed for male pediatric residents for both absolute and relative change by +3.47% and +14.77%, respectively. The data are self-reported. "+" denotes increase and "-" denotes decrease. --- Discussion This study suggests a relative increase for female pediatric residents by 13.27% compared to a relative increase for male pediatric residents by 14.77% from 2007 to 2021. For racial composition, the highest relative increase for pediatric residents has been observed for the Asian/Pacific Islander followed by Black , White , and Hispanic from 2011 to 2020. However, Native Americans/Alaskans relatively decreased 50% during the same time. For women, there has been a substantial increase across various clinical disciplines in the last three decades , including pediatrics [10]. The factors for higher numbers of female pediatric residents are flexibility with job selection, geographic location, autonomy over working hours, more scholarly and educational endeavors, and part-time opportunities [17]. About 63% of pediatricians in the US are women [18]. While it is promising, there is still a considerable lack of equity in professional opportunities. Even in this female-dominated profession, in which they may have greater opportunity to organize and demand equal pay for equal work, women receive 76 cents on the dollar compared to their male counterparts [17]. Our study indicates an increase in Asian/Pacific Islander, Black , and Hispanic representation while a decrease in Native American/Alaskan representation in the last decade. This trend is consistent with existing studies [14,15]. Not all Asian subgroups are underrepresented in medicine. East and South Asians make up a higher proportion of physicians and are considered "over-represented." However, Filipinos, Vietnamese, Cambodians, and others are underrepresented in medicine [19]. The rise in Asian representation can be attributed to substantial gains in the admission rates of minorities in medical school admissions [20]. In 1980, the percentage of Asian, Black, and Hispanic medical school matriculants was 4%, 6%, and 4.9%, respectively. The percentage of Asian, Black, and Hispanic medical school matriculants increased to 21.3%, 7.1%, and 6.3% in 2016, respectively. However, Native American/Alaskan medical school matriculants were 0.4% in 1980, which decreased to 0.3% in 2016 [20]. The reasons for not choosing a career in pediatrics by URiM include decreased exposure to academic opportunities in early careers, higher financial burdens, educational debt, experiences of bias and harassment, poor recruitment efforts, and a smaller number of racially/ethnically concordant peers and mentors [21]. The US needs a multifaceted collaborative approach to eliminate healthcare disparities and increase diversity in the healthcare workforce [22]. It is imperative to recruit and retain diverse employees for successful healthcare systems that better understand, reflect, and meet the healthcare needs of the diverse communities [4]. Many medical institutes have taken initiatives to increase diversity among medical school matriculants by allocating financial resources and establishing diversity councils [23]. Although these steps temporarily assisted in improving diversity among residency programs; however, these are not sufficient to achieve diversity, equity, and inclusion in residency training programs. More research is needed that can help devise interventions to enhance the experience of URiM and reduce barriers in academia [24]. The organizations need to add minority faculty in the resident selection committees to help the program directors prescreen the URiM applicants. When possible, URiM faculty members should interview URiM medical students [24]. The residency programs need to revise the scoring rubric to deemphasize United States Medical Licensing Examination scores, grades, Medical College Admission Test , and Alpha Omega Alpha memberships and develop standardized interview questions. Diversity-led committees should be consulted to review URiM applicant pool for interviews. To minimize bias based on visual appearances, photographs should be discouraged and names should be omitted from resumes during review and ranking processes. Training in diversity for unconscious bias by a professional trainer should be provided in-person and remote [25]. Such initiatives can help to increase diversity among all medical residency programs, including pediatrics. --- Limitations There are limitations to our study. In the context of gender disparity, the non-binary option was not included in the ACGME Data Resource Books until 2020-2021. There is also a limitation of gender fluidity or non-binary/binary options data. Also, we analyzed the data from the annual ACGME Data Resource Books, which relies on participants' willingness to share their personal information. Since race is a complex social category with evolving meaning, the participants can select more than one race/ethnicity, potentially overestimating the percentage of residents who identify as URiM. There was no information about the combined gender and race of the pediatric residents, e.g., White men/women and Black men/women. There was no detailed information about the races in the unknown and others category. --- Conclusions The representation of female pediatric residents relatively increased as compared to male pediatric residents from 2007 to 2021. From 2011 to 2021, Asian or Pacific Islanders increased, followed by Black , White , and Hispanic races; however, the Native American/Alaskan relatively decreased. To improve diversity within the pediatrician workforce, we need to enforce effective recruitment initiatives and provide organizational support systems to support women and URiM during pediatric residency training. We need to create a culturally sensitive healthcare workforce that values diversity and inclusivity and enhances productivity. --- Additional Information Disclosures Human subjects: All authors have confirmed that this study did not involve human participants or tissue. Animal subjects: All authors have confirmed that this study did not involve animal subjects or tissue. --- Conflicts of interest: In compliance with the ICMJE uniform disclosure form, all authors declare the following: Payment/services info: All authors have declared that no financial support was received from any organization for the submitted work. Financial relationships: All authors have declared that they have no financial relationships at present or within the previous three years with any organizations that might have an interest in the submitted work. Other relationships: All authors have declared that there are no other relationships or activities that could appear to have influenced the submitted work.
The gender and racial profile of the pediatric population in the United States (US) is more diverse than that of the pediatricians that cater to their healthcare needs. Gender and racial diversity remains limited among pediatric residents and fellows, faculty, and leadership. Our study objectives were to explore the gender and racial disparity among pediatric residents in the US.This was a retrospective analysis of the Accreditation Council for Graduate Medical Education (ACGME) database. The database encompassed all residents in US pediatrics residency programs from 2007 to 2021, categorizing them into White (non-Hispanic), Asian/Pacific Islander, Hispanic, African American/Black (non-Hispanic), Native American/Alaskan, others (races not included in the mentioned categories), and unknown. Gender was grouped into male, female, and not reported.From 2011 to 2021, the greatest increase in relative change (%) was seen for Asian or Pacific Islander (+58.42%), followed by Black (non-Hispanic) (+45.24%), White (non-Hispanic) (+43.37%), and Hispanic (+42.18%) races. The Native American/Alaskan relatively decreased 50%. The representation of female residents relatively increased by 13.27% as compared to the relative increase of male residents (+14.77%) from 2007 to 2021.It is imperative to have a healthcare workforce that is representative of the existing communities in the US in terms of race, ethnicity, and gender to provide culturally sensitive care to the diverse patient population of the US.
Introduction Migration is an increasing phenomenon worldwide [1], and in Germany, Turkish migrants represent the largest population group with a migration background [2]. There is an increasing number of older people being diagnosed with dementia in general [3,4], and a high number of people with migration background living in Germany with dementia [5]. Therefore, valid screening of cognitive impairment and dementia in this population group is important and will become even more relevant with regard to the demographic change [6,7]. Migration is a critical life event and causes changes concerning different life areas , which may have an influence on health and cognition [8,9]. For several countries, studies have shown that general health status and cognitive test performance can be lower in individuals with a migration background than in those without [8,9]. For example, in Germany, language barriers and low educational level of immigrated persons are known to negatively influence access to the German health care system [10]. Moreover, recent studies show correlations also between level of acculturation and health-related quality of life [11,12]. However, cognitive screening tools that provide normative values for migrants are lacking. One of the most frequently used cognitive screening tools in both Germany and worldwide is the Montreal Cognitive Assessment . Yet, limitations exist concerning the assessment and results of the MoCA in general and for migrants in particular, which affect its interpretation and decrease its diagnostic accuracy. For example, test scores are corrected for education, but not for age and sex, although all of these variables have been demonstrated to have an impact on test performance [14][15][16][17]. Moreover, depressive symptoms may influence cognitive performance and, in fact, have been shown to decrease MoCA performance [18,19]. Concerning Turkish people living in Germany , it is possible that factors associated with the process of migrating also influence MoCA outcomes. Notably, migration is known to be a stressful event with manifold challenges, and previous research indicates that stress is a possible etiological factor for cognitive impairment and Alzheimer's disease [20][21][22]. In terms of language barriers, a Turkish version of the MoCA already exists. However, it is questionable whether it is an appropriate and culture-sensitive tool to assess the cognitive status of Turkish migrants living in Germany, as it was validated in a Turkish population living in Turkey and did not consider the possible bias of specific characteristics of this population, including the migration processes and its consequences [23]. Taken together, there is a need to investigate possible influencing factors on MoCA test performance in individuals with a migration background, particularly sociodemographic variables , depression, and the migration process. To address this issue, we investigated MoCA test performance in native Germans and Turkish migrants aged 50 years or older living in Germany by testing them in their mother tongue . Next, the sociodemographic variables of age, education, and sex, depressive symptoms, and migration background were analysed as potential predictors of performance. Our hypotheses were that age, sex, education, and depression are predictors for cognition measured by the MoCA in both the German and the Turkish samples. Furthermore, we expect that "country of origin" is also a significant predictor for MoCA performance . --- Materials and Methods The present cross-sectional study was conducted with healthy native German and Turkish people living in North Rhine-Westphalia, Germany as part of the TRAKULA project, which aimed to develop a culture-sensitive nonverbal test battery. Recruitment took place in 2016 and 2017 after the study was approved by the ethical committee of the University Hospital Cologne . The sample can be described as old-aged according to the World Health Organization , since the majority of the subjects were over 55 years of age [24]. Participants were recruited at different institutions in North Rhine-Westphalia. During recruitment, attention was paid to a balanced and diverse selection of contact points for people of Turkish origin. Individuals were recruited mainly in Cologne and the surrounding area, where many people with a Turkish migration background live, for example, in cultural institutions, mosques, or places where the Turkish community is commonly found. Furthermore, advertisements were placed in doctors' offices and on our clinic website. Written informed consent was obtained from each participant. All participants completed questionnaires assessing sociodemographic details. Testing and recruiting were conducted in the participants' mother tongue by German-Turkish bilingual and bicultural psychologists and trained bilingual students of medicine or psychology supervised by authors G.A. and Ü.S.S. --- Inclusion and Exclusion Criteria For all participants, inclusion criteria were a residency in Germany, being native German or being native Turkish and having a migration background, aged 50 years or older, normal, only slightly restricted, or corrected-to-normal vision and hearing, and the provision of written consent to participate in the study. Exclusion criteria were self-reported cognitive impairment or other past or current diagnosed neurological or psychiatric illnesses and cognitive disorders. --- Assessment of Cognition and Depression The MoCA [13] was administered using either the German or Turkish version [23,25]. Both versions have a maximum of 30 points and differ only in two subtests: memory and word fluency . The cultural adjustment that was made concerns the word "church" in the memory subtest, which was replaced by the word "mosque". The awarding of points in the individual subtests corresponds to the original version of the MoCA. Participants are classified as cognitively impaired when reaching less than 26 points in the German [25] and less than 21 points in the Turkish version [23]. The German version provides an education adjustment of one point for people who received less than 12 years of school education, whereas the Turkish version does not use an education adjustment, as proposed by Selekler et al. [23]. The cognitive domains tested in the MoCA are visuospatial/executive functions, naming, verbal shortterm memory, attention, language, abstraction, and verbal long-term memory [13]. Furthermore, the participants received the German or Turkish version of the Geriatric Depression Scale Short Form to assess depressive symptoms. The instrument consists of 15 yes/no items. Each answer counts as one point, and a maximum score of more than 5 points indicates possible, 6 to 10 points moderate, and 11 to 15 points severe depressive symptoms [26]. --- Statistics Statistical analyses were performed using IBM SPSS Statistics 25 for Windows . Normal distribution was tested using the Kolmogorov-Smirnov test. Possible differences in demographic data and depressive symptoms between the two groups and within groups were analysed using t-tests, or chi-square tests, where appropriate, each with a significance level of α = 0.05. G*Power was used to estimate the achieved power with a post hoc analysis [27]. To analyse predictors of MoCA performance, linear regressions were conducted , with the total MoCA score as a dependent variable and simultaneous entry of the predictors of age, sex, education, and depression. To further analyse migration as a possible predictor of MoCA performance, an additional regression analysis was calculated for the combined German and Turkish sample, including age, sex, education, depression, and migration as possible predictors. Due to different sample sizes, the German and Turkish samples were matched. For this purpose, the first 133 German participants were included in the total sample size and ordered according to sex to ensure a uniform distribution of women and men participants in the overall regression analysis. The education correction was not included in total MoCA scores used in the regression. The assumptions of multiple regression models were checked according to the suggestions of Field [28]. --- Results --- Sample Characteristics Demographic characteristics and results of the MoCA and GDS are shown in Table 1. Participants in the Turkish sample were significantly younger, less educated, showed significantly lower scores in the MoCA, and were significantly more depressed than participants in the German sample. German women were significantly less educated and more depressed than German men, whereas Turkish women were significantly younger, less educated, and showed lower performance in the MoCA than Turkish men did. [13]) with a maximum of 30 points . Depression was measured using the Geriatric Depression Scale with a maximum of 15 points. * Primary school in Germany = 0-4 years; primary school in Turkey = 0-5 years. --- Predictor Analysis The regression model for the German sample is presented in Table 2. The entire regression model reached statistical significance = 25.77; p < 0.001). The explained variance of the model was 19.2% . Predictors for MoCA performance were more years of education , younger age , being male , and lower levels of depression scores . Table 3 presents the regression model for the Turkish sample. This regression model was also significant = 6.25; p < 0.001), but in contrast with the German sample, the only significant predictor in the Turkish sample was more years of education . The explained variance of this model was 13.7% . The regression model for the overall sample of German and Turkish participants, which included the predictors age, sex, education, and depression as well as migration, was significant = 15.16; p < 0.001), with having no migration background and higher education as significant predictors. The explained variance of this model was 21.1% . --- Discussion In this cross-sectional study with healthy older German adults and healthy older adults with Turkish migration background living in Germany, we investigated the impact of the sociodemographic variables age, sex, education, and migration background as well as depressive symptoms on cognitive performance, operationalized with the broadly used MoCA screening test. The main results are that MoCA performance in the German sample was predicted by age, sex, and education, in the Turkish sample was only predicted by education, and in an overall sample was predicted by education and migration background. First, results indicate that the German and Turkish samples differ significantly in sample characteristics; however, this finding reflects the current state of research: regarding sociodemographic variables, Turkish people are younger and less educated, which is in line with the results of a representative statistical survey on individuals with migration background in Germany [2]. Furthermore, they are more depressed, which is also in line with a previous representative study [29,30]. Finally, MoCA total scores were lower, which was expected according to other results on the cognitive state of migrants in different countries [31]. Our finding that MoCA performance in the German sample was predicted by more years of education, younger age, being male, and less depressive symptoms is in line with recent investigations in other population-based cohort studies that found significant predictors of cognition were also age, sex, and education [32][33][34]. The fact that younger age predicts MoCA performance has been described before [35] and can be well explained by the normal process of aging, which is accompanied by structural and functional brain changes leading to age-associated cognitive decline [36]. Further, the impact of education on cognition per se and the MoCA is also well known [37]. In contrast, sex as a possible predictor has less consistently been demonstrated and needs more consideration in future research [32,33,[38][39][40][41]. Notably, as a typical pattern, German women were less educated than men in our sample, which can partly explain the results. Finally, our finding that lower depressive symptoms predict MoCA performance in the present study matches a whole body of evidence supporting the negative impact depressive symptoms have on cognition [42] and, more specifically, in elderly people [19]. In summary, in light of our data and other available data, the fact that the MoCA only provides a correction for educationat least for the German version-seems insufficient, and further versions that correct for the major influencing factors will improve precision of the screening process [34]. For the Turkish sample, the only significant predictor for MoCA performance was education, again demonstrating the consistency of this influence factor on cognition. In a study by Demir and Özcan [43], education was also an influencing factor on MoCA test performance in a Turkish population, but only in the language subtest. It is interesting to note that no differences could be detected in the other subtests. One reason for this could have been the small sample size of the study . In another study on MoCA performance in Turkish migrants living in Germany [44], education and age were significant predictors. A possible reason for the lack of a significant age effect in our sample is the narrow age range, as 86.5% of the Turkish migrants were between 50 and 69 years and only 13.5% were 70 years or older , whereas in the study by Krist et al. [44], individuals aged between 20 and 69 years were included. Sex was not a significant predictor in either study. Interestingly, depression, which was not assessed by Krist and colleagues, was not a significant predictor of MoCA performance in our study, although our Turkish sample was more depressed than our German sample. Thus, the impact of depression on cognitive performance in this population needs further investigation. Our overall regression analysis, including both German and Turkish samples, again identifies education as having a substantial impact on MoCA performance. However, having or not having a migration background was an even stronger predictor of MoCA scores, showing that the migration process itself or life circumstances as a migrant predicts lower performance. Notably, Turkish migrants have worse working conditions, socioeconomic status, and health states in comparison with German people. However, it has been proposed that due to the harmful experience of migration, Turkish migrants are affected by faster aging processes, and this aspect was related to the fact that the prevalence of dementia is increasing more among this population in comparison with native Germans [7]. All of these aspects may explain why the migration background has such an influence on MoCA results even in healthy individuals. Importantly, our data indicate that normative data for the specific group of migrants will enhance the diagnostic accuracy of cognitive screenings. This aspect is also supported by further research. In a comparative study in the USA, different cut-off values for the MoCA were examined depending on ethnicity. In the detection of the optimal cut-off value in MCI, the authors found a point discrepancy of 1-2 points among non-Hispanic Whites, Hispanics, and non-Hispanic Blacks and a point discrepancy of 3 points in the detection of dementia [31]. Another systematic review that examined the cross-cultural application of MoCA also found a wide range of cut-offs, within and across different cultures [45]. Some limitations must be considered when interpreting the results of our study. First, information about health status was only assessed by self-reports. We cannot ensure that the study population did not include cognitively impaired participants, especially when considering MoCA test scores, as the MoCA cut-off score used for the Turkish sample was as low as 21 points, following the normative study by Selekler et al. [23]. When comparing our Turkish control group with the control group of Selekler et al. [23], there are differences of about two points. In the control group of Selekler et al. , the average MoCA score was 23.50 , whereas our Turkish population averaged 25.11 points . Therefore, further studies should exclude cognitive impairment and dementia with a more elaborate clinical examination. In addition, an elaborated neuropsychological assessment is needed to replicate our findings to ensure generalizability. Furthermore, a detailed status of migration was not assessed in the present study. Yet, this information could be used as a further predictor for cognitive performance, as second-generation immigrants may already be more integrated . In the present study, we defined origin as "first language learned". However, various definitions of migration background exist and they are often not comparable [46,47]. As a result, our study may not be comparable to other investigations. Further studies should include a more specific operationalization of migration and its different variants. For example, in the study conducted by Krist et al. [44], Turkish migrants were able to select the test language , and the group that picked the German version showed significantly better MoCA scores than those who were tested in the Turkish version. This result indicated that the level of acculturation and integration differed and that this level was associated with cognitive performance. Another systematic review on bilingualism as an influencing factor in test performance in older adults indicates that migration status, acculturation level, and language of neuropsychological testing need to be considered when assessing bilingual older adults [48]. In line with this, the systematic review on migration and cognition conducted by Xu et al. [9] demonstrated a significant association between a higher level of acculturation and better performance in cognitive functioning among migrants. However, a recent study showed that more data are needed to better evaluate the utility of measuring acculturation level in neuropsychological assessment [49]. One main strength of the present study is the inclusion of a German sample as a control group to compare predictors of cognitive performance between migrants and nonmigrants. Another strength is that our study included both sociodemographic variables and depressive symptoms as possible influence factors on cognition. --- Conclusions The present study investigated sociodemographic and affective predictors of MoCA performance in German individuals and Turkish migrants living in Germany. The most important finding is that migration background and education have an impact on cognitive performance: individuals with a Turkish migration background and individuals with lower education scored lower on the MoCA. The need for culturally sensitive instruments that take the educational situation into account has also been noted in other studies. The influence of education on the MMST test performance was shown to be similarly high in a Turkish population in Denmark [50]. In addition, a recent study on diagnosing dementia in patients with a migration background among German general practitioners showed that a language barrier could significantly complicate the diagnostic process [51]. Therefore, culture-sensitive and education-adjusted screening tools for the assessment of cognitive functioning in this population group are of high importance and these factors should be considered when developing new tools for the assessment of cognitive functioning or normative data for the MoCA for specific subpopulations. Notably, some work has been done in this respect in recent years. For example, Goudsmit et al. [52] developed the Cross-Cultural Dementia Screening as a culture-fair test for addressing these problems in a Turkish population living in the Netherlands. Furthermore, our own working group has developed a culture-sensitive dementia test battery tool for Turkish migrants living in Germany that is based on culture-fair nonverbal materials [53,54]. More generally, as predictors of MoCA scores in separate samples of German individuals and Turkish migrants differed according to age, education, sex, and depression with only education having predictive value in both populations, our study further emphasizes that normative studies for specific populations are important. For clinical practice, the results of the MoCA should be interpreted with caution. The results can provide initial information, but new and culture-specific tests are still needed. For example, further studies are needed that apply a new weighting of the MoCA subtests with demographically adjusted standard scores. A better alternative would be a validated culture-fair test battery that considers group-specific characteristics and cut-offs as well. --- Data Availability Statement: Data sharing not applicable. --- Author Contributions: Conceptualization, G.A., Ü.S.S., J.K. and E.K.; methodology, G.A. and M.R.; formal analysis, G.A. and M.R.; investigation, G.A. and Ü.S.S.; resources, E.K., J.K. and O.A.O.; data curation, G.A. and Ü.S.S.; writing-original draft preparation, G.A.; writing-review and editing, M.R., Ü.S.S., H.L.-J., O.A.O., J.K. and E.K.; supervision, J.K. and E.K.; project administration, Ü.S.S., J.K., G.A. and E.K. All authors have read and agreed to the published version of the manuscript. Funding: This research received no external funding. --- Institutional Review Board Statement: The study was conducted according to the guidelines of the Declaration of Helsinki, and approved by the Ethics Committee Medical Faculty of the University of Cologne . Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. ---
The validity of the Montreal Cognitive Assessment (MoCA) in migrants is questionable, as sociodemographic factors and the migration process may influence performance. Our aim was to evaluate possible predictors (age, education, sex, depression, and migration) of MoCA results in Turkish migrants and Germans living in Germany. Linear regression models were conducted with a German (n = 419), a Turkish (n = 133), and an overall sample. All predictor analyses reached statistical significance. For the German sample, age, sex, education, and depression were significant predictors, whereas education was the only predictor for Turkish migrants. For the overall sample, having no migration background and higher education were significant predictors. Migration background and education had an impact on MoCA performance in a sample of German and Turkish individuals living in Germany. Thus, culture-specific normative data for the MoCA are needed, and the development of culture-sensitive cognitive screening tools is encouraged.
INTRODUCTION Tourism is one of the many sectors that positively impact national income . Since 2016, Indonesia's tourism sector has contributed to the Indonesian economy . In 2019, the Government of Indonesia wanted to double this figure to 8% of Indonesia's Gross Domestic Product . Tourism is one of the sectors that can absorb the tourism workforce of 13 million people in the tourism sector. In order to increase the competitiveness of tourism for cities/regencies in Indonesia, the government, or in this context, the Ministry of Tourism and Creative Economy , created a Tourism Index in Indonesia in 2016. The primary purpose was to identify ten cities/regencies with the best Indonesian Tourism Index. The ten cities/regencies were Denpasar City, Surabaya City, Batam City, Sleman Regency, Semarang City, Bandung Regency, Bandung City, Banyuwangi Regency, Bantul Regency, and Bogor Regency . Bogor Regency is one of the regions in West Java province that is constantly included in the top ten regencies/cities with the highest Indonesia Tourism Index. The high tourism index in Bogor Regency is due to several aspects, i.e., the business supporting environment aspects, the governance, the tourism potential, and the infrastructure. These four indicators normatively determine the high and low Tourism Index of a City /Regency in Indonesia. Apart from the high Tourism Index, Bogor Regency is faced with the challenge of being able to develop tourism potential but still guided by sustainable tourism and based on community development. Currently, tourism in Bogor Regency is expected to have a positive impact, such as the positive impact on the economy, environment, and socio-culture around the tourist location . Based on these considerations, the Bogor Regency Government plans to develop the concept of the Pongkor Earth Tourism Park . Ciasmara tourism village is one of the villages inside the Pongkor Geopark Tourism Priority area, which is also situated in Mount Halimun Salak National Park . Ciasmara Village is a Tourism Village that has extensive tourism potential, e.g., waterfalls , hot springs, camping grounds, agricultural culture, traditional musical instruments, and terraced rice fields. Tourism development in Ciasmara village started in 2006 when the community began to open access roads to Siregar, M., R., A., Damayanti, N., A., Sugiana, D., Khadijah, U., L., S. . Measuring community's views on the development of community-based tourism in Ciasmara and identify the factors that influence them. --- LITERATURE REVIEW --- TOURISM CARRYING CAPACITY The United Nations World Tourism Organization defines tourism carrying capacity as the maximum number of people who can visit a tourist destination area at the same time without causing damage to the physical, economic, and sociocultural environment and unacceptable deterioration of quality. This definition signifies tourism activities as crucial and exciting for an unlimited time without changing the local environment and satisfying stakeholders . The general description of the carrying capacity assessment began in the 1960s. "The first flow defines tourism capacity in reference to how much the number of tourists can be accommodated before the negative impacts begin to be seen; The second school of thought defines the capacity achieved when tourists themselves see a negative impact and begin to attract from an area because it no longer meets their needs." The carrying capacity assessment is based on the relationship between the tourism industry, the environment, and local communities. However, this carrying capacity assessment needs to identify the threshold of a destination. Meaning, local stakeholders/ tourism planners need to assess the carrying capacity of their goals and map acceptable impacts on the natural, social and economic environment . In terms of sustainability from the socio-cultural aspect, perceptions, and attitudes of citizens in Hongcun, China is one of the images of how the impact of tourism shows dynamic changes. Along with the development of tourism in the area, residents have a positive perception and optimistic attitude towards the economic, environmental, social, and cultural impacts of sustainable tourism development. However, it was also found that the level of the negative perception of economic, environmental, and socio-cultural effects also increased significantly . --- SOCIAL AND ECONOMIC IMPACT It is suspected that there are contradictions in the distribution of benefits, which lead to a change in the level of benefit for residents and directly affect their perception. In particular, the phenomenon of two-way mobility between urban and rural areas of --- CULTURAL IMPACT Cultural aspects receive less attention in the debate about sustainability, perhaps because their impact on society is slow, difficult to determine, and the current social paradigm is not ready for the transfer of power. The cultural issues are related to identity, ownership, spiritual significance, and society's moral and legal rights. The main reasons why contemporary sustainable tourism pays little attention to cultural aspects could be: cultural aspects are problematic to measure, culture is seen as another commodity that can be substituted for cultural aspects cannot be expressed politically considering them as part of a tourist product, local communities adapting easily to change, and helping to open their minds . The definition of community-based tourism is a tourism activity that supports the traditional way of life of local communities and helps the community obtain prosperity by protecting and maintaining socio-cultural values and cultural resources, and natural heritage. This business's ownership, management, operation, and supervision belong to the community. Sustainable tourism, which is used as an approach to tourism development as a global standard, demands a draft policy that involves the concepts of participation, empowerment, transparency, and justice . The development of tourism studies currently focuses on the study of sustainable tourism development in developing countries, especially in rural communities. Many villages are capable of hosting well-resourced with great potential for tourism development. The understanding of sustainable tourism development has emerged as a result of the idea that the sustainability of tourism depends on the conservation and development of resources used for tourism purposes and the various studies and models developed in the effort toward this understanding . --- METHODOLOGY --- RESEARCH METHODS This study aims to examine the communities' perception of the social and Meanwhile, Inference statistics used in this study is the Analysis of Variance . --- DATA AND INSTRUMENTS The instruments in this study are divided into four parts. The first part contains the characteristics of the community, the second part includes the community's perception of the perceived economic impacts, the third part is about the community's perception of the perceived social impacts, and the last part is the community's perception of community-based tourism development in the village. For all four parts, the statement given is answered using a 4-scale Likert scale with a choice of answers strongly disagree, disagree, agree, and strongly agree. --- VALIDITY AND RELIABILITY The validity analysis of this research instrument uses Pearson's Product Moment. For its reliability test, it uses Alpha -Cronbach. The Validity Test results show that all statements on economic and social impact variables are valid with a value of R Calculate above R Table 0.361. Furthermore, regarding communities' perceptions of communitybased tourism development, there are three invalid questions out of a total of 23, leaving 19 valid questions. At the same time, for the reliability test, the results show 0.702 for the variable economic impact, 0.720 for the social impact variable, and 0.827 for the perception variable towards community-based tourism development in Ciasmara village. The community in Ciasmara village is dominated by people who are male. This finding is in accordance with official data from Ciasmara village, which reports that the community in Ciasmara village is dominated by men . The majority of the population in Ciasmara Village works as rice farmers, and this is because Ciasmara village is one of the rice farming center villages in Bogor Regency . This study discovered that, although Ciasmara village is a tourism village, not all residents have access to able to work or do business in tourist locations. Based on the explanation from the chairman of Village-Owned Enterprises Wahyu , the insufficient access of the community to do business within the tourism village area is because the community must be registered as the organizer of the Ciasmara tourism village in order to be allowed to work in the tourism sector. In this study, the perception of the socio-economic impact of tourism development in Ciasmara Village is defined as the extent to which community-based tourism in Ciasmara village is able to provide social and economic benefits to the community in Ciasmara village, Pamijahan District, Bogor Regency. Table 2 shows that communitybased tourism in Ciasmara village has been considered to positively impact the socioeconomic conditions of the community of Ciasmara village. Table 2 shows that the people of Ciasmara tourism village are starting to feel the direct economic impact in the form of increasing income, opening up jobs, and improving the community's economy from the development of community-based tourism in Ciasmara tourism village. The average results in table 2 for economic impact show that community-based tourism in Ciasmara Village is categorized as providing positive benefits to the community in Ciasmara Village with an average score of . Ciasmara tourism village has focused on developing village tourism since 2006 and officially became a tourism village in 2013. Its tourist attractions have grown from only two sites at the beginning Curug Saderi tourist attractions and Pasir Luhur camping ground, to a total of 7 tourist attractions at the moment. They are camping grounds, Waterfalls Saderi, Waterfalls Tebing, Waterfalls Pelangi, Waterfalls Hordeng, Waterfalls Cikawah, and Cipanas Karang hot springs. This development indicates that tourism in Ciasmara tourism village extends from time to time. This development has somewhat given economic impacts on the community in the Ciasmara tourism village, such as the emergence of stalls selling heavy and light meals, cigarettes, ojek transportation services, public transport for village visitors, tourism guides, and tourist gatekeepers. In addition to the direct economic impact in the form of increasing income, this study also found that there are indirect economic impacts felt by the people in the Ciasmara tourism village, such as the construction of road access for tourism which enables easier access for farmers in Cibereum villages to carry their crops and avoid spending the extra money to rent transportation services as now intermediaries can come to the farm site and bring their agricultural products directly. --- RESULTS AND DISCUSSIONS People in Ciasmara village also consider that CBT in Ciasmara Village can help the community improve its economic conditions. As stated by Aruk , before there was tourism in Ciasmara village, people in the Cibereum village area mostly worked as illegal mining miners with extremely high safety risks. The development of tourism in Ciasmara village has allowed people in Cibereum to open stalls and work as tour guides so that they have additional income not only from the agricultural sector but also from the tourism sector. The indirect economic impact that is also felt by the community in Ciasmara village is the increase in land prices in the village, especially around tourist sites and roads to tourist sites, because the village administrator, through a grant from the Bogor Regency Government, has built 1,2 km road which then has an impact on increasing land prices, from previously around Rp50,000 / meter to Rp500,000/meter . These findings indicate that community-based tourism in Ciasmara village, managed by the village community, has a positive economic impact on the people in Ciasmara village, especially those in the primary location of tourism. Ciasmara Village has been focusing on developing tourism in its village since 2006 and became a tourism village in 2013. The number of tourist attractions in Ciasmara village has also grown from the beginning of only two; now, through mutual aid activities, the community has opened seven additional tourist attractions. This condition is an indication that the development of community-based tourism in the village continues to happen and pretty much impacts the community in the tourism village, such as in increasing places to sell food or stalls, motorcycle taxis, transportation to tourist locations, places to stay, and tour guides. --- Community Perceptions of the Perceived Social Impact of Community-Based Tourism Development in Villages. Based on experts' explanations, social impact focuses on changes in values, behaviors, lifestyles, societal structures, and social relations that occur in the community collectively and individually . In this study, it is noticed that, socially speaking, the existence of tourism in Ciasmara village has positively impacted the community of Ciasmara village. The perceived benefit is that the existence of this tourism is able to bring people together in the village . To make traditional musical instruments in Ciasmara village increasingly known by the wider community, not only in Ciasmara village , and able to advance Celempung Traditional Arts . The community recognizes the existence of Ciasmara village tourism as being able to increase the activity and popularity of Traditional Celempung art. Yudi said that after tourism in Ciasmara village developed, Celempung often had the opportunity to perform at events and celebrations both within and outside the village. As stated by Yudi , the cultural attractions in Ciasmara village are Celempung traditions. In fact, this tradition has existed for a long time in Ciasmara village and has been passed down for generations. Wahyudi explained that the leader of the Celempung culture was Mbah Odo. Celempung has historically never disappeared and has always been preserved by eight members of the Celempung Dormitory Saba traditional group, 3 of whom are also active as village managers. According to Wahyudi, some celempung tool houses are still often played by Ciasmara village artists. For staging in public places, the usual ones who perform are the traditional groups of young people chaired by Wahyu Hidayat. This staging group called Gending Celempung Asrama Saba began to be created in 2021 to become one of the attractions supporting tourism in Ciasmara village. The preservation of local cultural traditions is indeed one of the focuses of community-based tourism development. As stated by Arintoko et al. , community-based tourism must support local people's way of life and help the community obtain prosperity by protecting and maintaining socio-cultural values, cultural resources, and natural heritage. One of the negative social impacts that typically arise from the development of tourism in villages is traffic congestion and conflicts among communities and between local communities and immigrant tourists . This research revealed that, up to now, tourism has not had any negative impacts on the village community. Furthermore, the village community agrees that the tourism development in Ciasmara village from 2013 until now has not caused any congestion . This is because, among others, most tourist visitors in Ciasmara village use motorbikes so that it does not interfere with the mobility of local people and does not take up road space. Tourist sites are spread out and are not focused on one point allowing the distribution of parking lots. Tourism administrators have also anticipated avoiding congestion and overcrowding of parking lots by collaborating with residents surrounding the tourist sites to provide their houses as parking lots. In addition to reducing density, this strategy also has an economic impact on the community whose place is used as a parking location. Every weekend, 30-40 motorcycles can park in a single tourist location. Congestion is found a little on the main road before heading to the tourist site, but the cause is the Angkot that stops to look for passengers to and from the local market. People in Ciasmara village see that tourism development in their village will not cause any conflict. Ciasmara village people notice that tourism in Ciasmara village is a movement initiated by the community, and, until now, it is fully managed by the community in collaboration with Village-Owned Enterprises from the village. Handi admitted that tourism management in Ciasmara village is still purely managed by the community. There has been no intervention from investors outside the village and Community Organizations . Many investors have come and are interested in building tourism cultural vehicles but are rejected by residents and community tourism managers because people are worried that if they hold tourism in their villages, they can eliminate community participation and harm the environment. Because in fact, community-based tourism in Ciasmara village aims to improve the community's welfare and also care for the environment. Tourism development in Ciasmara village has an impact on improving access or roads that were previously rocky but have been improved with asphalt/concrete roads in the last four years. This condition has its own social impact on the people of Ciasmara village. Initially, the middlemen did not want to come to the farmers who were located at tourist locations. Now, middlemen want to go to the site, making it easier for farmers to sell their agricultural products. --- Factors Affecting Communities' Perceptions of the Socio-economic Impact of --- Tourism in Ciasmara Village This study uses analysis of variance to see in more detail what factors influence the perception of rural communities towards the social and economic impacts of community-based tourism in villages. This study found that community locations have a P-Value value of 0.57. This value is greater than the statistically significant threshold of 0.05, meaning that there is no significant difference in social impact between the perceptions of people living around tourist sites and those who do not live around tourist sites. The level of education influences people's perception of the economic impact felt by the community. People with a higher level of education tend to be more able to feel the economic impact compared to people with lower education, with a P-Value value of 0.01. This is because the higher a person's level of education, the more they will see that community-based tourism will provide economic benefits to the broader community, as stated by , who said that basically, community-based tourism is an effort to boost the economy, especially marginalized groups of people. Meanwhile, the community land ownership factor also affects the perception of the economic impact felt by the community in the village with a P-Value of , meaning that people who own land have a tendency to feel the financial impact more than people who do not have land. This is because people who have land can afford to open a parking lot or business in front of the location of their house or land so that they can benefit from the existence of community-based tourism in Ciasmara village. Meanwhile, Table 4 shows that the Analysis of Variance of People's Perceptions of Social Impacts differs from the previous findings. The location of the community influences the community's perception of the social impact of communitybased tourism in the village with a P-Value value of 0.017, meaning that there is a difference in tendency between people living around the tourist location and people who do not live near the tourist location. People who live in tourist sites tend to better feel the social impact of tourism development in the village compared to people who do not live around tourist sites. The reason is that with the development of community-based tourism in the village, the road to the location or access road to the tourist location also improves. Indigenous groups that once nearly disappeared have also reappeared. Indigenous groups' existence emerges because a wider audience increasingly recognizes their original traditional arts. Besides that, community participation in tourism development is also growing. On the other hand, the level of education does not influence the community's perception of social impacts because the P-Value value is 0.346 or greater than 0.05, and so does land ownership. It does not have any influence on the perception of the social impact felt by the village community because the P-Value value is 0.291. The village community is also keen to help promote tourism . --- CONCLUSION This study aims to see the socio-economic impact of community-based tourism development in Indonesia, especially in the Bogor Regency area. This study found that rural communities have been able to feel the economic and social impacts of communitybased tourism in Ciasmara village. The people in the village most feel the economic impact is the opening of stalls selling heavy, light meals, cigarettes, motorcycle taxi transportation services, angkot transporting visitors, tourism guides, and tourist gatekeepers. The introduction of these jobs impacts rural communities' increasingly varied livelihood strategies, not only as farmers, but they get additional economic benefits from tourism. Meanwhile, the social impact that the people in the village feel the most is that this community-based tourism can make the relationship between the community closer and more familiar. This is because the existence of community-based tourism makes the community work together in unlocking new tourism potentials, and indigenous peoples are heavily involved in cultural celebrations in the village.
The objective of this study is to examine the impact of community-based tourism (CBT) practices in Ciasmara Village, Bogor Regency, specifically focusing on the social and economic benefits to the community. The study aims to understand how traditional management of community-based tourism affects the local population and to identify potential differences in economic impacts between residents living near tourist sites and those residing farther away.The research methodology employed a purposive sampling approach, selecting 210 respondents from the community. The study utilized various data analysis techniques, including average score calculations and analysis of variance (ANOVA). These methods were applied to assess the social and economic impacts of community-based tourism practices in Ciasmara Village.The research findings indicate that the implementation of community-based tourism in Ciasmara Village has led to positive economic and social outcomes for the community. However, a noteworthy observation is the divergence in economic impacts between residents living in close proximity to tourist sites and those residing farther away. The study's analysis, conducted through techniques such as average score calculations and ANOVA, reveals these differences in the economic trends experienced by these two groups within the community.In conclusion, community-based tourism practices in Ciasmara Village have yielded positive economic and social effects on the local population. However, the study highlights disparities in economic impacts based on residents' proximity to tourist sites. This nuanced understanding underscores the importance of considering the geographical distribution of these impacts when planning and implementing community-based tourism initiatives. Such insights are crucial for ensuring equitable and sustainable development in rural areas, emphasizing the
Introduction Physical activity is one element of children's lives proven to be beneficial for their present and future health outcomes [1][2][3]. However, epidemiologists suggested that various sedentary behaviours such as television viewing are associated with a myriad of potentially adverse health conditions [4]. It has been suggested that one of the most important influences on both children's physical activity and sedentary behaviours appear to be the family, with only 'biological factors or children's own cognitions, attitudes and affect about activity . considered more proximal factors' [5] . Families are becoming less stable, with more children likely to experience transitions from one family structure to another [6,7]. Westernized countries contain more diverse family structures resulting from a decline in marriage and rising divorce rates. In England, 24% of dependant children are now living with lone parents, whereas 12% live in a stepfamily [8]. It is proposed [9] that a decline in the conventional 'nuclear' family may, in part, explain low levels of physical activity among children and that such social transformations in families may be a key influence on children's physical activity and sedentary behaviours. In fact, a recent qualitative study [7] indicated that the transition from one family structure to another resulted in children reporting declined physical activity participation and increased sedentary behaviour. From a quantitative perspective, associations between family structure and children's physical activity have produced conflicting results. Findings from the United States [10,11], Canada [12], Australia [9,13,14], and England [15] reported no association between children's activity in single-and two-parent families. By contrast, further US studies [16][17][18] stated that children in single-parent families were more active. However, additional studies [19][20][21] found that children in two-parent families were typically more active than those in single-parent families. These latter findings are supported by recent qualitative studies [7,22], which indicated that children from alternative family structures and lower socioeconomic backgrounds were subject to fewer experiences of physical activity. While the study of family structure and physical activity has produced conflicting results, the association with sedentary behaviours appears more conclusive. A review of the literature [23] found that television viewing was consistently inversely proportional to the number of parents in the home, with children aged 9-13 years from single-parent families consistently watching more television than those from two-parent families. Similar results were shown by another English study [15] and two Australian studies [9,19], though children may still be sufficiently active, even when watching high levels of television [24]. In order to fully understand the contexts in which these conflicting behaviours occur, further qualitative research is required as there are limited studies to permit conclusions about the influence of family structure on children's activity [25]. Since there is a need for further qualitative research in this area, this paper embraced both quantitative and qualitative elements to help illuminate the influence of family structure. Similar to a previous study [22], it adopts an ecological approach to physical activity yet maintains a particular focus on the family as a social environment. Ecological approaches of health behaviour focus on individual influences that may facilitate or inhibit individual behaviour [26]. According to the ecological approach, behaviour is influenced by various facets of the environment and personal factors. Moreover, this model posits that multiple levels of influence determine individual behaviour and that these levels of influence vary from the most proximal to the most distal [27]. The microsystem, as the most proximal, is thought to have the most direct and explicit influence [28]. Since this system is the most immediate and intimate setting in which individuals interact , consisting of both social and physical characteristics, it was explored here to determine how it facilitates or constrains certain behaviours. This study explored psychosocial and environmental factors that contributed to children's participation in physical and sedentary activities. Specifically, it looked at how different family structures affected children's time in various activities coupled with exploring the underlying explanations for such behaviour. --- Methods A mixed methods approach sequenced into two phases was utilized. The preliminary phase used a questionnaire to produce a quantitative description of children's activity patterns by family structure. The second phase employed semi-structured interviews with a purposefully selected sample of children in an effort to further explore common themes related to their engagement in various activities and the challenges encountered with regard family structure. Ethical approval was obtained from the institution of the authors prior to data collection with additional permission to conduct the study obtained from the Principal and Head of Physical Education for each school. Consent to work with the students was obtained via in loco parentis. The use of a mixed methods approach strengthened the validation of the study as triangulation of methods was achieved [29]. --- --- Instruments Instrument 1: self report questionnaire The instrument employed for the first phase of research was a self-report questionnaire developed based on Cale's [34] 'Four by One Day Physical Activity Recall'. This measure was designed to capture the type and the length of time children engaged in activities from the previous day only. A reliability of r = 0.62 was obtained for the original questionnaire and was deemed a reliable measure of physical activity [35]. Concurrent validity was assessed using heart rate monitoring and an observational method. The resulting relationship for heart rate monitoring was r = 0.61 , while no significant difference was recorded between the recall and observational values . Children aged 11-14 years were therefore thought to be capable of accurately recalling time in activity for one previous day only [34,35]. The measure adopted for this study was derived from detailed feedback from participants after initial piloting. Initial respondents commented on the list of physical and sedentary activities included in the original questionnaire and identified additional activities that they thought would be more appropriate. The resulting instrument contained a list of 26 activities that could be categorized according to type [36][37][38] . 'Sedentary activities' included those activities that may be considered inactive [39], while 'domestic activities' were comprised of household duties or domestic chores and responsibilities. In contrast, 'lifetime activities' were activities that could be freely undertaken when and how individuals chose, with whom and wherever they wanted and were recreational, often with a health and fitness orientation [37][38]. Unlike lifetime activities, 'game activities' were competitive in nature and often comprised of numerous players restricted to particular contexts [38]. 'Partner activities', while similar to lifetime activities , ultimately required a partner. The final category of 'other activities', while also recreational in nature and similar to lifetime activities, was rarely carried over into adulthood [36] and hence to did not fall under any of the previous categories. --- Instrument 2: semi-structured interviews The second phase of the research process involved conducting semi-structured interviews to further explore children's experiences of activities identified Family structure and children's activity in the questionnaire and the reasons behind their engagement. Qualitative interviewing allowed the researcher to gather an understanding of the participant's experiences and generate pictures by reconstructing events about a specific topic [40,41]. A semi-structured interview schedule was devised to enhance findings from the questionnaire and initially piloted with 12 children before the final schedule was created. The resulting questions were specifically focused on the impact of family structure and their engagement in physical activities, ranging from 'What activities do you normally do with your family?'; 'Do you enjoy doing physical activities with members of your family, why?' and 'Is there anything that prevents you taking part in physical activities more often?' Procedures Phase 1: self-report questionnaire For the distribution of the quantitative instrument, classes within the schools were randomly selected and the associated students were then engaged in the first phase. The questionnaire was administered before physical education lessons on two separate days with the researcher and teacher present at all times to distribute, deliver, collect and assist with any difficulties the students may have had with comprehension. The researchers read out the questions to all students and asked participants to firstly indicate their age and gender and to write down who they normally lived with at home and their relationship to them. This was completed on the first page of the questionnaire by the students, which allowed for the responses to be categorized by family structure. The researcher then asked whether they had engaged in any of the 26 activities on the previous day and, if so, to report their time in that activity to the nearest 15 min. Each individual activity was read out by the investigator before children responded. The questionnaire was delivered once on a Monday and once on a Wednesday capturing participants' previous day activity that could be compared across family structures. --- Phase 2: semi-structured interviews All students who participated in the initial phase were invited to participate in the second phase during a school assembly and given the option to decline or withdraw at any point. Based on family demographic data from the initial phase, participants for the interviews were then purposely selected from the same school year, gender and family structure. Thirty small group interviewers [with approximately two children per interview ] were then conducted in an open P.E. staff room and lasted between 20 and 45 min. With permission, interviews were recorded and immediately transcribed verbatim so as to ensure a complete and accurate record of the data was obtained. --- Data analysis Analysis of the self-report questionnaire data Data analysis was carried out on PASW Statistics 18.0, with weekend and weekday data analysed separately since there is greater discretionary time available at weekends, which may influence behaviour [42]. All data were tested for approximation to the normal distribution by Kolmogorov-Smirnov test. Continuous minutes in each activity variables were found to be non-normally distributed, with significant skew and kurtosis evident in many variables. Attempts were made to correct the large positive skew of these variables using logarithmic transformations but the data remained nonnormally distributed. Activity minute data were therefore analysed using non-parametric statistics. Kruskal-Wallis tests were used to identify any effect of family structure on the time spent carrying out different activities during the week and at weekends. Where differences were found, Mann-Whitney U tests were performed to determine the location of any differences between family structures. Gender comparisons within weekday and weekend activities were also carried out by Mann-Whitney U tests. Exact P values were calculated where possible but in the event of computational problems, a Monte Carlo approximation based upon 200 000 samples was used to determine the P value [43]. A Bonferroni correction was applied to the probability of a Type I error when multiple comparisons were carried out [43]. In order to more easily present the non-normal distributions of activity minutes data, durations spent for each type of activity were grouped in 30-min intervals from 0 min. --- Analysis of the semi-structured interview data Analysis was based on deductive and inductive procedures [44], which involved scanning the data for common categories and themes , developing working typologies on an examination of initial cases and then modifying and refining them on the basis of subsequent cases [7]. Peer-debriefing and members check methods were used to enhance the trustworthiness of the study [29,45]: the lead researcher met with a sample of participant children to comment on interview transcripts and preliminary findings. The data analysis was also conducted by two researchers who independently coded responses before resulting categories from both were compared. While it is acknowledged that each student's experiences were unique, the quotations presented were chosen as they were consistently reported across the sample of participants. --- Results Data reported in the Results section are addressed in the same order that data were analysed before being interpreted together in the following discussion and conclusion. The participant characteristics for both phases are reported together in Table II. --- Quantitative results --- Sedentary activities There was a significant effect of family structure on the time spent carrying out sedentary activities in children during the week [H = 9.17, P < 0.01; Table III] and at the weekend [H = 7.55, P = 0.02; Table III]. Further analyses showed that there were no significant differences between intact couple families and stepfamilies during the week or weekend or between single-parent families and stepfamilies . A significant difference was found between intact couple families and single-parent families during the week and weekend . However, the effect sizes of week and weekend were small. Mean ranks suggested that children from single-parent families spent more time engaged in sedentary activities during both the week and the weekend . When the data were split by gender, the effects of family structure were present for boys' weekday activities [H = 7.63, P = 0.02; Table III] but not for girls [H = 4.19, P = 0.13; Table III]. In addition, there were no effects reported for weekend sedentary activities between genders [H = 5.72, P = 0.06, boys and H = 3.09, P = 0.21, Family structure and children's activity girls]. Further analyses of the boys' data for sedentary activities during the week failed to highlight significant differences even after correction to account for multiple comparisons . No differences were shown between intact couple and single-parent families , intact couple and stepfamilies or stepfamilies and single-parent families . --- Domestic activities There was no effect of family structure on the distribution of time spent in domestic activities during the week [H( 2 --- Games activities There was no effect of family structure on the distribution of time spent on games activities in the week [H = 5.91, P = 0.05]. In addition, no effect on the weekend activity was found [H = 3.04, P = 0.22]. There was, however, an effect of family structure on boys' weekday games activities [H = 7.12, P = 0.03] but not girls [H = 1.06, P = 0.59]. However, this pattern was not present in weekend games activities [H = 5.86, P = 0.05, boys and H = 2.60, P = 0.27, girls]. Further analyses of the boys' data for games activities during the week showed a significant difference between stepfamilies and single-parent families . Mean rank data suggested that boys in single-parent families spent less time in games activities than those in a stepfamily . In fact, only 3% of boys from single-parent families spent more than 90 min in games activities compared with 28% of boys from stepfamilies. There were no differences between intact couple and single-parent families or intact couple and stepfamilies . --- Partner activities There was no effect of family structure on the time spent on partner activities in the week [H. Actually, 23% of female participants from intact couple families spent more than 90 min in these activities compared with just 11% of girls from single-parent families. There were no differences between stepfamilies and single-parent families or intact couple and stepfamilies . --- Lifetime activities There was an effect of family structure on the time spent on lifetime activities in the week [H = 9.70, P < 0.01; Table IV] but not at the weekend [H = 1.70, P = 0.43; Table IV]. Further analyses of the lifetime activities data during the week showed significant differences between intact couple families and single-parent families . Although this effect was weak , the mean ranks suggested that children from single-parent families spent less time in lifetime activities during the week . There were no differences between intact couple families and stepfamilies during the week or single-parent families and stepfamilies . When the data were split by gender, an effect of family structure on boys' weekday lifetime activity time was found [H = 9.72, P < 0.01; Table IV] but not for the girls' sample [H = 2.63, P = 0.27; Table IV]. This effect was not seen in weekend lifetime activities for males [H = 2.27, P = 0.32] or females [H = 1.33, P = 0.52]. Further analyses of the boys' data for lifetime activities during the week showed no significant differences between intact couple and stepfamilies or stepfamilies and single-parent families . An effect of family structure between intact couple and single-parent families was seen for boys' weekday lifetime activities . Mean rank data suggested that boys in intact couple families spent more time in lifetime activities than those in a single-parent family . --- Table III. --- Continued --- Qualitative results --- Sedentary activities Consistent with findings from the questionnaire data were numerous reports from children in singleparent families that highlighted their engagement in after-school sedentary pursuits. Jack, for example who lives at home with his mother, described how a lack of parental support in the form of transportation prevented him engaging in physical activities. Instead, he was left to engage in sedentary activities until such time when his mother returned from work. She encourages me to get out cos it's hot out there . cos I've got a new X box and I'm always playing on it . . --- My mum's job [referring to barriers to activity], she gets back at like half five so if I want to go anywhere to do anything it's normally too late so instead like I just play X box and stay in when she's not back. Despite his desire to engage in activity and his mother's encouragement to avoid sedentary pursuits, the fact that she returned from work late and there not being another adult present prevented him from being able to access physical activity. The fact that children from single-parent families reported spending more time in sedentary activities may be due to a lack of availability of joint family activities. Essential to young children's development is socialisation with significant influences, such as parents. However both Adam and Naomi argued that the only time they had to engage with their parents was while watching television together. We watch TV, and have dinner and everything. Well not everything, she [mother] wants her own space and like wants to do everything that she wants to do rather than me going with her all the time but we normally watch TV together . . She's normally [mother] really busy with like housework or other work so yeah . it's quite hard like she just don't have time I guess and she just wants some time to herself but sometimes we like . well yeah just TV really. Apart from watching like TV . no not really [referring to family activities] . maybe used to do little things when they [parents] were together ages ago but she's not got the time now so yeah just TV. In the previous examples, Adam suggested that his mother's desire to use her free time, outside of her domestic chores, for herself restricted their ability to interact and engage in anything other than low-intensity sedentary pursuits. Similarly, Naomi pointed towards time as a barrier to engaging in anything other than sedentary pursuits with her mother. Interestingly though, she indicated that this was not always the case when both her parents were together. Similar findings were reported for weekend sedentary activities. In most cases, children from singleparent families spent the weekend visiting their absent biological parent. For example, James who lives with his mother during the week and spends the weekends with his father cited his family environment as a barrier to engagement in physical activity. We watch some TV together at my dads but my sister like wants me to take her out in the garden and we play a bit of football or something just the two of us . he's [father] really busy with like you know D.I.Y which isn't good. Evident from this quotation and a common theme among responses from children of single-parent families was the limited time available for physical activity pursuits that contributed to the development of sedentary behaviours. --- Lifetime activities Unlike in single-parent families, the availability of more family members during the week seemed to T. Quarmby et al. encourage engagement in lifetime activities. Children from intact couple families and even some stepfamilies readily reported participating in certain lifetime activities after school and in the evenings. Sam, for example highlighted that while he engaged in activity with his father, his mother ensured that all other family responsibilities were met. Yeah, bike rides, parks, picnics, cinema, town, things like that, shopping . I go riding with my dad and sometimes go for a run with her [mother] and like sometimes she comes cycling too . [but usually] she does housework and cooking and stuff so it's all ready for when we get in. Similarly, Hannah recalled how her family environment acted in a way that allowed for one parent to compensate for the other to ensure that her and her sister's regular activity was not compromised. We go swimming on Fridays and then . Me and my mum and dad, and my two sisters we go swimming on Fridays, straight when mum and dad are back from work. It's something we've always done for ages . like sometimes if dad, cos he works late, just mum comes with us but we've always done it. This highlighted a form of joint family activity that occurred during the week. There is a clear contrast between children from two-parent families and those from single-parent families whose parents faced barriers that prevented them from supporting their child's engagement in certain physical activities during the week. The extract below demonstrates the difficulties single-parent children faced in trying to engage in lifetime activities, when their single parent returns home from work and then has to contend with domestic chores; this is representative of all single-parent children involved in the study. . sometimes we go on a bike ride and I play . football with my brother. We used to play in the garden quite a lot . [but] not as much . he's never in any more so now I just stay in a bit more and watch a bit of TV with mum when she's back from work and after she's finished doing the house stuff . . The home social environment in two-parent families appeared more conducive to physical activity during the week as two parents were able to manage daily domestic duties better, which ultimately enabled more free time to engage in easily accessible lifetime activities with their children. --- Discussion Consistent with previous studies [9,15,17,19,23], children from single-parent families reported spending more time engaged in sedentary activities than those from intact couple families. Findings here support the notion that the relationship between family structure and children's activities appears stronger for overall sedentary activities than physical activities [5,15,23]. Qualitative data were used to enhance quantitative findings and indicated that children from single-parent families faced barriers during the week and at the weekend as to the amount of time they could spend with their parents, ultimately affecting their availability to engage in joint activities other than those most accessible . Similar to previous reports [5,46], these children have parents with numerous additional responsibilities such as caring for other children and household duties, which made managing their children's physical activity difficult due to logistical constraints such as limited transport and a lack of time. Consequently, this created a home environment that promoted sedentary behaviours as the only joint activity. A common sedentary activity is TV usage, and several authors contend that TV viewing in young people is positively associated with parental viewing habits [23,[47][48][49]. Hence, if TV viewing is a more collaborative activity in single-parent families, then the modelling of such behaviours may influence Family structure and children's activity children's leisure choices and sway them towards common sedentary pursuits [48]. Unlike previous studies [9][10][11][12][13][14][15][16][17][18][19][20][21] that produced conflicting results for the relationship between family structure and physical activity, total physical activity was not assessed here. However, types of physical activity were considered and quantitative results indicated differences for games activities and other activities. Though no overall association was reported for family structure and these groups of activities, further analysis suggested that boys in stepfamilies spent more time in game activities during the week, while girls in intact couple families spent more time in other activities at the weekend than their counterparts in single-parent families. Similar gender effects were found for lifetime activities. A significant difference was reported between those in intact couple families and those in single-parent families. Children from intact couple families appeared to spend more time in lifetime activities, an effect largely from the boys' data. Lifetime activities are thought to be health and fitness orientated [36,38] and possess a greater carryover value than team or game activities as they are often more readily available. Hence, if children engage in lifetime activities, then there is a greater possibility that they will follow a physically active lifestyle during adulthood [36]. Qualitative data suggested that during the week, these activities were more readily engaged in by children from intact families, who were likely to participate with one or both of their parents. In the children's reports, while one parent took care of household duties, the other was able to engage in easily accessible lifetime activities with them. If children from both types of two parent families are exposed to and spend more time in lifetime activities in youth, then there exists the possibility that those children will continue to engage in similar activities in adulthood as opposed to children from single-parent families. Similar to a previous report [7], children from two-parent families received more physical and social support to engage in activities after school. According to Baranowski [50], the 'family is something more than the sum of its parts' , suggesting two parents are better suited to manage the family environment more easily than single-parent families. It was evident here that children from single-parent families faced more barriers and lead more sedentary lifestyles than their intact couple family counterparts. As with a previous qualitative study [7], children in single-parent families received less parental support due to their parent's lack of free time, workload and catering for younger siblings, which in turn impacted on family logistics. Furthermore, many children reported that at weekends, they had to travel to see their other biological parent who in some cases did not live nearby, restricting time to engage in anything other than sedentary activities. Nevertheless, sedentariness is a complex multifaceted behaviour and it must be noted that other factors not measured here may have influenced the type of activities single-parent children engaged in at the weekend. A key strength of this study was the use of a mixed methodology to triangulate results and provide richer information than would be available through the use of a single method. This allowed for potential barriers and reasons behind behaviours to be illustrated. Additionally, the research was conducted with children rather than relying on parental assumptions of behaviour. On the other hand, despite the inherent challenges in recruiting lowincome parents, their views would add to these findings and allow for further multifaceted correlates to emerge. Finally, the focus on lower income children allowed for greater comparability between family structures and provided an insight into the lives of these, arguably more disadvantaged, groups. However, using the IMD may not accurately reflect the actual level of deprivation of the families from which these participants were drawn since children may not live in the same geographical ward to that of their school. Nonetheless, since all three schools were in close proximity, the IMD did provide reasonable indication of the deprivation of families living in the area and pointed towards the sample of this study, representing an area-level approximation of low socioeconomic status. The T. Quarmby et al. nature of the overall study is indicative of the specific population and therefore may not apply to children from other socioeconomic strata . Despite being interviewer administered, the questionnaire remains a selfreport approach with the potential for socially desirable responses. Furthermore, since children are also less time conscious than adults tending to engage in activity at sporadic times, accurate recall is difficult [51]. --- Conclusions Drawing from an ecological approach, this research suggested that the nature of the family structure restricted the availability of joint family activities and impacted on the amount of time children spent in certain physical activities. For some children, their opportunity for joint activity was limited to sedentary pursuits with their single parent as this was the most accessible activity once parents had finished their additional duties. In contrast, children from intact couple families spent more time during the week engaged in accessible lifetime activities, as a joint or whole family activity, thanks to a greater ability to manage the family workload. This is particularly important since lifetime activities possess a greater carryover value into adulthood, suggesting that children from two-parent families who engage in more of these types of activities may be more active in adulthood [36,38]. The results of this research suggest future designs of family-based interventions look to address correlates of physical activity and sedentary behaviour for children, particularly in deprived areas. It may be that activities performed together have a more lasting effect. As single-parent families struggle to find time to do this, future interventions could try to accommodate the competing demands that single parents face . It may also be important to consider what parents themselves do and that reducing sedentary behaviour in youth may require actions to change the behaviour of adults particularly among single-parent families. Furthermore, future research should explore the intersectionality of factors [52] such as socioeconomic status, ethnicity, race and locality with regards to the issue of family structure and children's engagement in physical activity.
This mixed method paper explored the effect of family structure on children's physical activities and sedentary pursuits. It furthers the limited understanding of how family structure impacts on children's time in, and reasons behind engaging in, certain physical activities. Children from three inner city comprehensive schools in the Midlands, United Kingdom, participated through questionnaires (n 5 381) and semi-structured interviews (n 5 62). The results indicated that boys and girls from single parent families spent more time in sedentary activities during the week and at the weekend (P < 0.01) when compared with their intact couple family counterparts. It was identified that children in single-parent families received less parental support due to a lack of time, transport and additional parental responsibilities that created a family environment that encouraged sedentary pursuits. Moreover, the barriers that encouraged sedentary activities also prevented children in single parent families from engaging in lifetime activities during the week. Children from intact couple families recorded more time in lifetime activities than those in single parent families (P < 0.01). Finally, children in twoparent families had more opportunities to engage not only in these activities individually but also in joint activities with their parents, further reinforcing these behaviours.
Introduction In the nineteenth and twentieth centuries, the rapid growth of Earth's population led many authors to make pessimistic predictions. For example, Malthus believed that while the population would increase quadratically over time, available resources would only increase linearly. According to Malthus, this would lead to ever greater impoverishment because the population would continue to grow. Looking at more recent writers, Ehrlich expressed similar thoughts, saying that humanity had lost the battle to sustain itself and that we could soon expect the destruction of civilization. Authors who earlier predicted the demise of humanity assumed that Earth's population would continue to grow at an accelerating rate. Indeed, Earth's population grew from 1 billion to 2 billion in 123 years, while it took 33 years to reach 3 billion, and then only 14, 13, and 12 years to increase to the next billions. In 1999, the Earth's population was 6 billion . However, this was also a turning point, because facts and estimates suggest that it will take an increasing amount of time for the population to grow by increments of another 1 billion . The population is expected to reach 10 billion in 2058 . Further projections are increasingly uncertain, but the United Nations does not expect the population to reach even 10.5 billion by the end of the century. Vollset et al. expect the global population to decline from the last third of the century, and the United Nations also predicts a slight population decline by 2100. Overall, there have been substantial changes in the lifestyles of people of childbearing age in both developed and developing countries which, among other factors, clearly involve a preference for having fewer children. This will result, after a few decades, in population decline. The fact is that, in about two-thirds of the world today, the problem is no longer population growth but population decline, either now or in the near future. Population decline and increasing life expectancy are associated with population aging, which is especially the case in more developed countries . In many parts of the European continent, and elsewhere such as in East Asia, the threat of depopulation already looms. In the countries of Central, Eastern and Southern Europe, the impact of population decline is already being felt because, on the one hand, the Total Fertility Rate has been below replacement level for a relatively long time, and on the other, there is a high level of emigration from many countries in the region of mainly the younger members of the population . This process further reduces the number of children that are born. In those European countries where no population decline has yet occurred, the TFR has also fallen to low levels. In these countries, lower mortality rates and immigration have partially prevented population decline , and insufficient time has elapsed since the TFR fell below the replacement rate for the effect to be noticeable . In most African countries, in which the TFR remains well above the replacement rate, the relatively high TFR represents a decline from historical levels. In developing countries, the TFR averaged six in 1950 but had fallen to three by the early 2000s . In the early 2020s, the global TFR of 2.31 is barely above the level needed for reproduction. In addition, at least two-thirds of the world's population already live in countries where the total fertility rate is lower than the fertility rate needed for population reproduction . According to United Nations' data, global population growth is still expected between 2020 and 2050, but about two-thirds of this growth will take place in Africa. The fundamental cause of population decline is the fall in the TFR to below 2.1, the current replacement rate, which has only been offset by immigration in some countries. Goldstein and Cassidy have shown that at current mortality rates, In developed countries, the fertility rate associated with the reproductive level is around . , but in less developed countries it is higher, in some cases exceeding . due to higher mortality rates . and without immigration, it will take about 40 years from the time the TFR falls below replacement level for the population to start declining, assuming that the TFR remains at that low level. For this reason, many governments are using economic policies to increase the propensity of families to have children: They support parents by providing financial benefits and childcare services. It is however unclear how effective these measures are, and it is very difficult to investigate this question due to potential delays in the births of additional children following these measures, and the effects of random events. In addition, some measures may bring forward the birth of children that their parents had intended to schedule for later but may not result in the birth of additional children overall. In such cases, these measures will only temporarily increase the TFR, and their impact will only be realistically seen after 5-10 years. In this article, we do not attempt to provide an econometric analysis of the relationship between rapidly changing economic policy regulation and the TFR, but simply describe how expenditure on child support has evolved in the countries of relevance to us, especially Hungary, and how the TFR has changed over time. We draw our conclusions by describing the facts. In the "Explanations of low fertility rates in the literature" section, following the introduction, we show how the literature since Becker has explained the declining preference for childbearing. Then, in the "Some examples of measures taken to increase fertility rates -a Hun-garian focus, and a European approach" section, we describe the changes in familysupport policies and the evolution of the TFR in Hungary. The Hungarian trends are compared both with the situations in the Central and Eastern European countries that joined the European Union and with the situations in other European countries. In the "Explaining the even greater decline in fertility rates than before -in the spirit of Becker section, we modify the original model of Becker and theoretically explain the drastic decline in the TFR. Finally, in the "Conclusion" section, we describe our conclusions. Explanations of low fertility rates in the literature Becker showed that the decision to have children can be viewed in the same way as the decision to obtain other ordinary goods. In terms of the number of children, quantity and quality may be seen as substitutable. Women are giving birth to fewer and fewer children but trying to provide their children with good living conditions and good educational opportunities. This idea is now commonplace in economics, and the decision to have children is often examined on this basis. Thus, deciding between quantity and quality has become central to the "consumption" of children as a good . In addition to economic considerations, we often encounter both ethical and philosophical approaches to childbearing. Häyry describes how rational arguments can be found for many conflicting reproductive theories. One of the most notable of these is the Old Testament revelation that conception is a gift from God. On this basis, many theologians hold that human beings must always accept God's gift and should not control the conception of a child . This idea is not confined to Christianity, and may be found in the views of members of other religions. Zhang argues that the issue of religion in childbearing is important because couples now have the option to prevent pregnancy, or in some cases choose abortion. However, most religions encourage their followers to marry rather than cohabit and do not interfere with the possibility of conception. Zhang also points out that religions are becoming more permissive, and it is perhaps for this reason that the fertility rates of religious and nonreligious families are converging in most countries, leading to declines in fertility rates. This can also be explained by the fact that religiousness has undergone a major transformation, where according to theories about secularization, modernization processes have made negative impacts on the stability and strength of religious communities, and their practices and beliefs . For many people, being religious is now different from what it meant for their parents: more and more people are abstaining from formal religious practice, rarely going to church or absenting altogether. They no longer consider themselves bound by religious observance . The number of people who continue to practice their faith is gradually decreasing, especially in Europe . As a result, the dogmatic approach of the church to childbearing and childrearing is having less influence . Without a doubt, the prevailing religious norms, except religious extremism, have been fundamentally shaped by socioeconomic circumstances, and as these circumstances have changed so have the standards. Caldwell showed that in developing economies that are adopting capitalism young people who choose wage employment are increasingly likely to have sufficient income to maintain a separate household and do not need to live in a traditional extended family to secure their livelihoods. The direction of cash flow between parents and children has also often reversed. New ways of life no longer require having many children. Similar ideas were expressed by Notestein , who pointed out that the factors which have reduced the mortality rate have also reduced the need to have numerous children. Bongaarts shows that fertility can be explained almost entirely by four variables: the proportion of married women in the population, contraceptive use among women, the number of abortions, and postpartum infertility. The first three of these four factors are a function of personal choice, involving a clear Beckerian quantity-quality trade-off and an increasing role for quality. In addition, the role of children in the family has changed considerably over the last centuries. In the eighteenth and nineteenth centuries, children were often seen as a means of production from a young age, taking on a share of the family's household tasks. The lower level of mobility, the close intergenerational household structure, and, most importantly, the lack of a pension system, meant that children were also a guarantee of a secure old age for their parents. Children ensured the survival of their parents in adulthood, after a significant decline in the latter's working capacity. Changes in living conditions have made this old lifestyle obsolete for the new generations, and the current situation for women is not conducive to having many children. McDonald also points out that the improved equality of women and incoherence in the approaches of social institutions are barriers to having more children. Although the institutions of modern society generally treat women as individuals in accordance with the principle of gender equality, the institutions that deal with the family support only a low level of gender equality. Lutz explains that low fertility rates create a trap and prevent the number of children from increasing. When the TFR has been low for several decades, the number of women of childbearing age will eventually start to decline, thus even if the TFR increases to a high level the total number of children that are born will be less. In addition, the economic cause for the decline in fertility rates is based in the high aspirations of the younger generation, given the relative prosperity of their parents, but their earning potential is steadily declining, partly because of an aging society. In addition, the ideal number of children that the younger cohort desire is shrinking, as they themselves have grown up in smaller families. In addition to this, Lutz show that the so-called "tempo effect" also greatly reduces fertility rates. Women are having their first children later, and sometimes waiting longer between children than before. This leads to a decline in women's ability to conceive. Historically, Hungary has been ahead of other European countries in terms of its decline in the TFR. As Spéder and Kamarás noted, Hungary was the first country in Europe to witness a period wherein the total fertility rate was below the replacement level of 2.1 , after which the TFR temporarily increased on multiple occasions, but as a result of further decreases has remained below the replacement level for all but 4 years since. Kamarás provides a comprehensive picture of childbearing trends in the 1990s and early 2000s. He clearly indicates that the increase in maternal age , modifications in marriage vs. cohabitation patterns, and changes in couples' preferences have led to the aging of society and a decline in the Hungarian population. Kamarás also suggests that if the above factors do not change radically, further aging and even faster population decline can be expected in Hungary. After serious economic policy efforts aimed at increases, the Hungarian TFR in 2020 was 1.56, according to the Hungarian Central Statistical Office, which is slightly above the average of 1.5 for EU countries. This comparatively 'not so low' TFR is also worth evaluating because, according to Spéder and Kapitány , the probability of women realizing their intention to have children is significantly lower in post-communist countries than in Western European countries. However, this value still means that Hungary is not free of the problems caused by a low fertility rate. Generally, on the European continent, children are no longer indispensable as a form of support for elderly parents. In addition, with improvements in nutrition, public health, and medical science, the probability of child survival has increased greatly in both developed and less developed countries. Thus, it is no longer necessary to give birth to such a large number of children to ensure that a sufficient number live to adulthood. The twentieth and twenty-first centuries have overall seen both a reduction in the necessity for older parents to be supported by their children and a reduction in the necessity for prolific childbearing to ensure a sufficient number of adult children. In addition, it has become possible to regulate conception, and parents may now opt to pursue a "quality" approach to children rather than one of quantity. --- Some examples of measures taken to increase fertility rates -a Hungarian focus, and a European approach The fertility rate has been declining in Hungary since 1960, except for a few periods of brief increase; more importantly, as we have noted in the previous section, there have been only four occasions between 1960 and 2020, see Figure 1 below, when the fertility rate exceeded 2.1. During this period, increasing the fertility rate has become a national economic objective several times, both before and after the regime change. To this end, a number of major measures and many smaller ones were taken. Paid maternity leave extending to 1 month after childbirth was introduced for mothers in industrial jobs as early as the late nineteenth century, but the duration thereof was increased during the era of socialism, and the benefit was made equal to the mother's previous salary. Every working woman became entitled to this benefit . However, other forms of family support were introduced only later. In 1967, the enactment of the 'Child Care Allowance' was introduced , which allowed mothers to stay with their children until the age of three without losing their employment, and with modest remuneration. In 1985, another form of maternity --- FIGURE Evolution of the total fertility rate, the tempo-adjusted fertility rate, and the di erence between the two, -. Source: HFD ( ), authors' editing. TFR, total fertility rate; TFR * , tempo-adjusted total fertility rate. leave, the 'Child Care Fee' , was enacted, which gave mothers about three-quarters of their previous salary for 1 year in exchange for caring their children . This was later extended to when the child reached the age of two, and even later, some employment was allowed in addition to receiving GYED. Although the introduction of GYES and GYED did raise the TFR for a few years after a slight delay, the increase was never very large and after a few years, there was another decline. In consequence, Hungary's population fell from 10,200,298 in 2001 to 9,769,526 in 2020, according to the Hungarian Statistical Office. The second type of measure is the so-called 'baby loan' , known before the regime change as the 'social housing subsidy'. The baby loan is a way of providing parents who have or will have children with support for the purchase of a house, a contribution to renovations, and a loan on very favorable terms. These grants were initially basically only available to families with at least three children, based on a Council of Ministers' decision in 1970, and were then significantly extended in 1985 by a Decree of the Council of Ministers. After many changes, sometimes involving the tightening up of this opportunity, the most generous version was introduced 2 years ago -the Prenatal Baby Support Loan. This loan makes it extremely easy for families to access housing. The third type of measure is the so-called 'family allowance' , which also has a very long history. This money provided to parents to support their children is not dependent on the parents' financial situation. The fourth measure is the tax decrease on earned income that parents are eligible for, depending on the number of children they have. This form of support was introduced a few years ago. The budget for these types of benefits for parents with children gradually increased following the change of regime, with the exception of 1995. At that time, the economic austerity package, which was signed by the then Finance Minister Lajos Bokros, also reduced the support for parents with children, although that reduction proved to be temporary. Despite all the support distributed in the years following the change of regime, the fertility rate fell even more sharply to 1.28 in 1999, and that decline continued later. After a slight rise, the TFR had fallen below 1.3 in 2010, and in 2011 it reached its lowest value ever, at 1.23. The economic crisis of 2008-2009 certainly contributed to these two extremely low values, but these levels still fit the underlying trend. Thus, in the early 2010s achieving a population turnaround once again became a national strategic objective. In 2018, the target was set of reaching a total fertility rate of 2.1 by 2030 . This has led to an increase in family-support expenditure as a share of GDP. According to the OECD , 3.5% of GDP was already being spent on family support in Hungary in 2017, with only France having a higher share among OECD countries. In addition to the increase in the amount of family support, the family-support framework has also been restructured, with the share of direct, subject-to-children transfers decreasing, while the share of indirect, mostly favorable transfers linked to loans has increased . Transfers associated with employment and wages have also been increased. It should be noted that some subsidies, such as housing loans, have also had undesirable consequences: it is likely that childbearing subsidies are part of the reason why house prices have risen significantly. The overall availability of housing for smaller families and those not receiving subsidies has been on a downward trend since 2015 . Figure 1 shows that from 2012 onwards the TFR did indeed start to increase. This might lead us to conclude that the increase in the total fertility rate in Hungary over the last decade is the result of changes in the family support system and an increase in expenditure, which raised the TFR to 1.56 in 2020. However, by inspecting the graph for the tempo-adjusted total fertility rate , we can reach a different conclusion. The tempo-adjusted total fertility rate takes into account children who would have been born if women's childbearing age had been the same as before . We can see that in the period 2011-2020 the TFR * barely exceeded the TFR, whereas previously the difference between the two indicators was quite large, even surpassing 0.4 in some years. This can be seen in the graph of the differences in Figure 1. The values of the TFR * that exceed the TFR indicate women's postponement behavior , whereby they give birth to planned children at a later age, which is particularly true for the first child. When the period of recuperation . postponed children) begins, the TFR gradually reaches the level of the TFR * . We believe that this is what happened in Hungary in the 2010s. This claim is supported by the fact that, according to HFD , the average age of mothers at the time of the birth of their first child was 25.1 years in 2000, 27.67 in 2010, and 28.36 in 2020. This should raise doubts about the effectiveness of economic policy measures, since the fertility rate in Hungary increased by only 0.33 between 2011 and 2020. As Spéder points out, only the share of families with fewer children increased, and the cohort-specific live birth rates of younger cohorts did not. An increase of 0.33 was far from sufficient to bring fertility rates up to the replacement level of 2.1. As we have already written, Goldstein and Cassidy show that the persistence of low fertility rates over four decades results in population decline. Our third argument for not overestimating the impact of family policy changes is based on a comparison with the fertility rates of the Central and Eastern European countries that joined the European Union. Figure 2 shows that the fertility of these countries has undergone similar changes since 1980 to those of Hungary. The slow decline in the rate seen in the 1980s after the regime change turned into a rapid fall until the early 2000s, followed by a slow rise or stagnation from then on. In 2020, the Hungarian total fertility rate was exactly the median of the region, where the Czech Republic, Romania, Slovenia, and Estonia have higher rates, Latvia, Lithuania, Poland, and Croatia lower, and the Bulgarian rates are broadly similar . The data suggest that the increase in fertility in Central and Eastern Europe over the past decade is probably due to birth postponement. This is supported by the increases in the TFR between 2009 and 2017 in all the CEE countries studied, except for in Bulgaria, Estonia, and Croatia , which in many cases did not appear to be linked to family support programmes. We could not find a single database for family support programmes that covered all countries, but we can illustrate the situation with examples. In Poland, for example, public spending on family benefits increased from 1.8 to 3% of GDP between 2009 and 2017, while in the Czech Republic it decreased from 3.1 to 2.9% over the same period, but fertility increased by 0.08 in Poland and 0.18 in the Czech Republic. Similarly, Estonia and Latvia can be cited as examples: between 2009 and 2017 Estonia's share of family aid as a proportion of GDP increased by 0.17 percentage points, while Latvia's decreased by 0.19 percentage points, despite a 0.11 decrease in TFR in Estonia and a 0.23 increase in Latvia. Over the same period, family benefits as a share of GDP changed by +0.05 and -0.21 percentage points in Slovakia and Slovenia, while fertility increased by almost the same amount in both countries: 0.08 and 0.09, respectively . With regard to our fourth argument, on the effectiveness of Hungarian family policy support, we now refer to the TFR of older EU Member States. In the past, it was considered valid ). Some countries in this figure are constituent republics of the former Yugoslavia. These countries may also have experienced a greater degree of political transition than other regime-changing countries. However, the degree of fertility transition experienced in these countries is roughly the same as in other regime-changing countries. It is true that Croatia did not witness the slight increase in TFR in recent years that most of the other countries did, but this also happened in Bulgaria and Estonia. that after reaching a relatively high level of GDP, a further increase in GDP would help to increase the TFR . This argument was supported by the fact that while in the 1990s the TFR in Southern Europe was very low, it showed an upward trend in Western and Northern Europe. However, later, Harttgen and Vollmer , among others, pointed out that the perceived increase was not robust to later refined values of the Human Development Index, while Furuoka questioned in its entirety the existence of a positive correlation between development and fertility. In the light of more recent data, Gaddy has also reached a similar conclusion. The evolution of the correlation is illustrated in Figure 3. Figure 3 shows the TFR values for GDP levels in the European Union countries at three points in time, 5 years apart. Luxembourg, with its high GDP and very low TFR, is classified as an outlier and is therefore excluded from the analysis. The linear trends, where GDP per capita is measured in thousands of euros, are fitted separately to the data 5 years apart and show an interesting correlation. The squares of the correlation coefficients of the linear trend lines are low at 0.1925, 0.2664, and 0.0318, in ascending order of years. Nevertheless, given the direction of the trend lines and the loose but nonetheless existing relationship, we can assume the following: Compared to 2009, in 2014 the trend line indicates lower TFR values with the same GDP levels and the slope of the trend line was also slightly less steep. In 2019, a linear line was obtained with a much smaller slope as compared to the FIGURE Relation between GDP per capita and total fertility rate in the EU Member States. Source: Eurostat data downloaded on June . 2014 trend, and the R 2 value is very low. This indicates that two phenomena occurred over time. Firstly, higher GDP values were associated with lower fertility rates, and secondly, after a passage of time, it was less and less common for high GDP to be associated with a significantly higher TFR. The extremely low R 2 in 2019 actually indicates that there was no longer a linear relationship between the GDP and the TFR. In other words, between 2009 and 2019 it was less and less true that richer countries in the European Union had higher fertility rates. The underlying reason, in the view of the previously mentioned authors, is that while the less developed countries were still in the phase of childbirth postponement in the early 2000s, more developed countries were already catching uprecuperating -but with an older maternal age. This resulted in a higher per capita GDP and a higher TFR. However, by the end of the 2000s this catch-up period had ended, also sharply reducing the TFR in more developed countries. The lesson for us is the following: regardless of whether families become richer as a consequence of economic development or as a result of targeted family benefits, they are not inclined to have more children. Explaining the even greater decline in fertility rates than before -in the spirit of Becker As described earlier, since Becker , the decrease in TFR has been explained in the literature mainly as a tradeoff between the quantity and quality of children. However, we believe that Becker's model in its basic form is insufficient to explain the drastic decline in TFR that we are seeing in developed countries today. Therefore, in this section, we reshape the initial assumptions of the Becker model somewhat so that the modified model can explain even very low TFR values. Our analysis is theoretical in nature, providing a microeconomic model context to explain the facts presented in the previous sections. The central element of our model is the utility function for individuals. The utility function is a theoretical construct, explained in practice by the behavior of agents. In our case, this is precisely the reduction in the mother's propensity to give birth . The mathematical formulation of the exchange between quantity and quality of children has been expressed slightly differently by various authors. In our description, we rely mainly on Becker , although we also modify the notation he uses to some extent. A similar line of thought can be found in the first paper of this kind by Becker , and also in Becker and Lewis and Willis , among others. Hereafter, the term "family" is also used to refer to couples with children. It is assumed that contraceptive methods are available so that the birth of a child is intended. The decision is then made on the basis of the family's utility function -Equation -and the family's budget constraints -Equation . In our modeling, we use the following approach: "All models are wrong, but some are useful" , and try to explain the observed events in theoretical contexts. Our model helps us to identify the causes of declining TFR and points out that we can only expect a strengthening of the intention to have children if preferences change. The utility function of the family: U = v + b n, q = U Where x is the quantity of other goods consumed by the family; n is the number of children; and the quality of each child in the family is q. We assume that b is concave in q . The budget-related equation of the family: p x x + p n + p q q n = p x x + Π c n = I Where p x is the fixed price of other goods; p n refers to the cost of child-rearing not depending on quality; p q refers to variable costs which depend on quality, like education, health, and other similar factors; and Π c is the total cost of raising a child: i.e., Π c = p n + p q . Finally, n is the number of children. Becker and his followers considered the price associated with quality, p q , to be fixed within a family, similarly to the cost of raising children independent of quality, denoted as p n . So the price of a child, Π n , is also fixed. In reality, however, the price of children with higher parity may decrease, be fixed, or increase. Examples of each of these situations are found in the literature. The intriguing question is how it can be that many families in more developed countries "buy" very few children, or do not even produce a first child. This can be explained in the spirit of Becker in the following way: If, in the case of given q child quality U x -Π c , 1, q < U x, 0, q , then no child is "bought". Otherwise, a first child is "bought". If U x -2Π c , 2, q < U x -Π c , 1, q , no second child is "bought". Otherwise, one is. And so on. If the price Π c of a child depends on the number of children, then and may be modified as in equations and . In the following, the first subscript index c of Π c,j irefers to the total cost of child-rearing, and the second index denotes the birth order of the respective child: U x -Π c,1 , 1, q < U x, 0, q U x -Π c,1 -Π c,2 , 2, q < U x -Π c,1 , 1, q And so on. Whether the ith child is "bought" depends on the price of the ith child and the shape of the utility function. If the utility function U is not only weakly but strongly concave in its variables, as we now assume, then even with a decrease The utility function was used in accordance with the conceptual framework of neoclassical microeconomics, in the same way that Becker ) used it, to quantify the value judgements of families. Frontiers --- Developers of the model Cost of having children Marginal utility of a child E.g., Becker , Becker and Lewis , Willis , Becker , Mihályi etc. Same for all children within the family, but by adapting to external circumstances the family chooses the costs. Decreasing. E.g., Mihályi , Abendroth et al. , Tan et al. Cost of higher parity child is higher. Declining, but the decrease in childbearing intention can be explained even with a slight increase in marginal benefit. E.g., Hirsch et al. , Schnaiberg , Holmes and Tiefenthaler . Cost of having children per family decreases per parity. Very strongly decreasing. Studies that suggest increases or decreases in child-rearing-related marginal costs do not necessarily assume increasing or decreasing marginal costs over the entire parity range, but they do make this assumption for some parties. All of the studies incorporate indirect child-rearing costs ; some focus on them directly, but the methods of calculation are not uniform. in "price", families will still have a small number of children. The focus is on the existence of inequalities and , and other similar inequalities. In such cases, even reducing the cost of having children through economic policy interventions has little effect on strengthening couples' intention to have children. Table 1 below summarizes how different conceptual approaches can be used to explain the declining propensity to have children. In Table 1, the last row is particularly noteworthy from an economic policy perspective. Various state benefits in cash and in kind can be used to reduce the cost of first and higher-parity children. However, if the marginal utility of families declines sharply with the number of children, economic policy measures will not achieve their goal. In our view, this is exactly what is happening in most European countries today. --- Conclusion We have shown, using the example of Hungary and to some extent those of the countries of the European Union, that the TFR has almost never reached the replacement rate in recent decades. This will inevitably cause a population decline, and in some countries such as Hungary the population is already decreasing. Such a decrease can only be prevented by welcoming large numbers of immigrants, which may cause other kinds of problems. If the fertility rate are to rise permanently above 2.1, and emigration were not to reduce a country's population, population decline might be halted again many years in the future. This is why Hungary and many other European countries have introduced various family-support measures. However, these measures have produced only modest results to date. In order for such measures to be effective, the preferences of families will need to change. In addition to the options offered by contraception, it is useless to reduce the cost of childrearing if the next child in parity order does not sufficiently increase the utility of the family. This idea is clearly explained by the Beckerian trade-off between quantity and quality. However, with a drastic reduction in the TFR, the choices of families cannot always be traced back to the original Becker model. Thus, a further tightening of the model is required. Assuming that the utility function for child-bearing is concave instead of the quasiconcavity assumed by Becker provides an acceptable explanation of why families do not want children. Since there is no indication of forthcoming modifications in the preferences of families, society will be required to adapt to the situation. It is unnecessary to increase the already high level of family-support expenditure, a significant part of which will be absorbed through other channels in any case. We must recognize the aging of the population and concentrate available resources on ensuring that, despite this aging process, all citizens enjoy a decent quality of life. This requires the organization of age-friendly jobs, the provision of appropriate medical care, and ensuring the financial security of very old people. There is also room to improve the education system for young people and provide them with more human capital. This investment in human capital will help them to cope with the aging phase of their lives better as society really does become older. However, these issues are subjects for another article. fertility rates. All authors contributed to the article and approved the submitted version. --- Data availability statement The original contributions presented in the study are included in the article, further inquiries can be directed to the corresponding author. --- --- --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
) The propensity to have children in Hungary, with some examples from other European countries.
Introduction Sleep, in one form or another, is a biological necessity for all living creatures. While the exact functions of sleep are still being determined and debated in the scientific community, the effects of going without sleep for extended periods of time have been fairly well characterised. Getting enough sleep is regarded as essential for our health and wellbeing and short sleep on a regular basis has been associated with the development a range of serious health problems, from obesity to cancer . Sleep deprivation has been associated with impaired cognitive performance, decreased productivity in the workplace and an increase in accidents and errors , highlighting the social costs and consequences of poor sleep. Concerns have been raised that, as we move further towards a global 24/7 society, the length of time we spend sleeping is being curtailed in favour of waking activities and social opportunities . Studies have found that although people do value sleep and link it to their general wellbeing, at the same time, sleep is often not given priority, instead being viewed as a 'disposable resource' or 'expendable luxury' . Sleep deprivation is thought to be commonplace in contemporary western societies and it is frequently claimed that on average, sleep duration is declining. Concerns about widespread sleep deprivation and the dangers of not getting enough sleep expressed by specialists in sleep science and sleep medicine have been picked up on and amplified through the media in recent years, transforming sleep from a personal matter and politicising it into a wider social problem of public concern . Although a still fairly nascent field of study, research into the sociology of sleep has begun to shed light on the social, cultural and political dimensions of sleep. How, when, where and with whom we sleep is influenced by numerous social factors as well as by transitions across the life course . Recent studies have shown how the meanings and values people attribute to sleep and the importance they give to it is likely to be gendered and differ according to other sociodemographic and sociological factors including age , socioeconomic status , occupation and substance use . As such, socially appropriate ways of 'doing sleep' and temporal and spatial patterning of sleep may differ between social groups. Recent large-scale surveys have drawn attention to the complex ways in which one's lifestyle, particularly in relation to work, impacts upon sleep. Shift work and long work hours , in particular, have been associated with short sleep duration and poor quality sleep . Work hours have also been linked to the development of sleep problems, the quality of sleep people get and the amount of time people spend asleep each day. For example, a recent study found that men actively negotiate the amount of time they are going to spend sleeping in relation to the amount of work they have to get done the next day , thus demonstrating the extent to which employment is a key factor in the social patterning of sleep . Sleep loss and fatigue are therefore prevalent problems in the modern workforce, particularly as long work hours and shift work become more common . Consequently, the impacts that working patterns and workload have on sleep duration and sleep quality are of increasing salience as we move further towards 24-hour living in the UK. Getting adequate sleep is considered to be important not only for physical health and psychological wellbeing but also for cognitive performance . Sleep quality and quantity are closely related to learning capacity and academic achievement, with sleep loss associated with a decline in neurocognitive and academic performance . Large-scale surveys focusing on sleep in students have found that sleep problems, difficulties waking up and falling to sleep at 'normal' times and feeling tired are common in this social group . For instance, in a recent survey of sleep in over a thousand students attending a US university, over 60 per cent were categorised as poor sleepers. Students reported frequently taking prescription, over the counter and recreational psychoactive drugs to alter sleep/wakefulness. Poor quality sleep was linked to physical and mental health problems and students stated that emotional and academic stress negatively impacted on their sleep . In addition to engaging in academic work, socialising activities late at night and use of visual media have been related to delayed bedtimes . As economic pressures have increased, it is also common for students to work in paid roles, further cutting into their sleep time. All of these factors can impact on sleep quality and duration and lead to students sacrificing their sleep in order to prioritise the escalating around-the-clock demands of the 24/7 society. Sleep, it seems, is something that is being cut back on, sacrificed or dismissed in different sections of society in order to prioritise the demands of the waking world. Sociological research into experiences of and expectations about sleep alerts us to how the broader social context, including lifestyle, work commitments, family responsibilities and the emotional labour attached to these social roles may influence sleep. Although there is much research to show that one's lifestyle and working patterns can have a significant influence on sleep duration and sleep quality, very few qualitative empirical studies have been conducted that focus specifically on the relationship between social context and subjective and embodied experiences of sleep. Building on previous research, the aim of this study was to conduct an in-depth and qualitative analysis of the sleeping practices and subjective experiences of sleep in two social groups, shift workers and university students. Data are analysed in order to assess shift workers' and students' attitudes towards sleep and the impact of working patterns and demands of social life on sleep and wakefulness, and to explore how sleep and wakefulness are being managed in daily life in each of these social contexts. The findings contribute to the emerging body of literature on the sociology of sleep. --- Methods Data are drawn from 25 semi-structured interviews that were conducted in 2008 as a part of a larger multi-method study 1 investigating the medical and non-medical use of cognition-enhancing drugs in the UK. An aim of this study was to assess how pharmaceuticals that can extend wakefulness and allow people to cut back on sleep are perceived across different social domains. Three of the themes emerging from the interview data are of relevance to this article: attitudes towards sleep, impacts of working patterns and demands of social life on sleep and managing sleep and wakefulness in daily life. In all 11 shift workers participated in the study. The participants were self-selected and recruited via a virtual space set up online via a social networking website with the group name 'UK Shift Workers'. This was used to invite people who were resident in the UK and currently working shifts to take part in a short interview. As a common or organised space where people who work shifts gather to form a collective identity as shift workers was not identified, the creation of this virtual space enabled the researcher to assemble and access a group of people who would have otherwise been difficult or impossible to reach . An implication of this sampling strategy is that the interview sample cannot be considered typical or representative of all UK shift workers. The interview sample consisted of a machine operator in a factory, an airport worker, a mental health nurse, a retail manager, a call centre operative, a delivery driver, two hospitalbased nurses, two hospital-based doctors and a police officer. The respondents were aged between 21 and 53, seven were men and four were women. The occupational roles and shift patterns of the interview sample were mixed, as was the geographical location of the participants. On aggregate, the working hours of the shift workers who were interviewed spanned the full 24 hours of the day, 7 days a week at all times of the year. In addition, 14 students were interviewed. The participants were randomly selected 2 from a larger group of 80 students from one UK university who responded to an initial e-mail advertising the research and asking for volunteers to participate in a study about sleep and health. They were aged between 18 and 24, 10 were women and four men, and all were studying for undergraduate degrees at the time of interview. Semi-structured interviews were used as a research tool in order to collect in-depth qualitative data on the meanings people attach to their experiences of sleep and wakefulness in each social domain, and explore the ways in which social structures and processes may shape these meanings . The interviews were either conducted face-to-face or over the telephone according to the preference of the respondent. Each interview lasted around an hour and was digitally recorded and professionally transcribed. The interviews were informal and conversational and the interviewees were given the freedom to describe their experiences and opinions in their own terms using their own words. Interpretation of the data took an in-depth and qualitative approach. The qualitative software programme NVivo 8 was used to facilitate the organisation of the interview transcripts and to support a thematic analysis of the data . Each section of the data was systematically sorted and coded. Topics were indexed, collated and cross-referenced in order to identify recurring themes and patterns of ideas , leading to the establishment of ordered relationships between codes and theoretical concepts . Emerging themes were named, data included in each of the themes were re-read and refined and the specific details of each theme were organised to ensure that the themes were internally coherent and distinct from one another . --- Findings Firstly, I briefly discuss respondent's attitudes towards sleep. The main section of the analysis then focuses on experiences of sleep in the workplace and the university. Finally, I turn to the rituals and routines, and the array of tools and techniques used by the respondents in attempts to control sleep and promote alertness in their daily lives. --- Attitudes towards sleep Although in general, the respondents were uncertain as to exactly what sleep was for; typically, sleep was valued and considered to be important for health, general wellbeing, appearance and physical and cognitive functioning. Both students and shift workers positioned sleep as something that was good for and needed by the body, an essential part of everyday life, a vital and natural period of time for the body and brain to rest and relax, repair, rejuvenate and recharge. As can be seen in the quote below, which is similar to the sleep narratives given by the men interviewed for Meadows et al.'s Eight hours' sleep per 24-hour period was commonly referred to in normative terms as the recommended, right or full amount of sleep one ought to get. However, typically, sleep need was individualised, being constructed as something that was specific to each person. Respondents reported that they thought they needed between 4 and 10 hours sleep per night depending upon on how active they had been that day and what they had to do the next day. Despite acknowledging the importance of sleep, like Toby, most respondents said that, for various reasons, they would usually sleep for a shorter period than they thought they should do: You want to do an 8-hour sleep, don't you? If you can. Well, five is, like, my regularit's not enough but, like, it's all you can do. In their accounts the respondents stressed the importance they placed on getting enough sleep by drawing on their own experiential knowledge of sleep deprivation and the experiences of friends and relatives. They discussed how lack of sleep could lead to illness, an impaired immune system, result in a poor diet, impaired daytime functioning and cognitive performance and have a negative effect on their appearance. Typically, the psychological, affective and cognitive impacts of sleep deprivation were emphasised in respondents' accounts. Respondents reported feelings of mental fuzziness, lapses in attention and concentration, memory problems, inability to focus, trouble with complex decision-making, feelings of irritability and frustration, low mood, anxiety and depression. As Hannah says in the quote below, some respondents saw the impact of not getting enough sleep as transforming their personality and went as far as to say that without enough sleep they are not their normal self: If I don't get sleep, the adequate, I'd say I need about 9 hours sleep, I feel groggy, I feel irritated, I just won't feel my normal self, a bit agitated and snappy. Respondents discussed the physical and emotional effects of lack of sleep as impairing their physical and cognitive performance. However, as Paul explains, the impact was thought to stretch far beyond this. Not getting enough sleep was also thought to influence the individual's ability to socialise with others and have a negative effect on interpersonal relationships and family dynamics: I was really starting to get like frustrated with it when I first went onto nights, being tired all the time, and just taking it out on people that were around me and stuffit makes you into not a very nice person. Experiences of sleep and sleepiness as described by each group will be discussed further in the next section. --- Experiences of sleep First, I discuss the impacts of shift work on sleep before focusing on the student data and students lifestyle on sleep patterns. --- Shift workers and broken sleep The effects of shift work on an individual's sleep were commonly explained using biological understandings of the body. Respondents described how working shifts caused their body's 'clock' to fall out of sync with their shift pattern, resulting in the body feeling awake at times when the respondent wanted to sleep and vice versa. This was especially the case in accounts given by rotating shift workers, who thought that the constant change in the timings of their shifts made it difficult for them to get into a 'proper pattern' of sleep and wakefulness, leading to them feeling 'tired all the time'. All the shift workers who were interviewed described times when they would feel excessively tired and struggle to stay awake at work, especially when working nights. However, the way in which this behaviour was problematised differed between respondents and was to some extent related to their occupational role. For example, the two medical doctors described how they were able to use a specific space in the hospital designated for their use to rest and sleep by taking a power nap. For other respondents, sleeping during working hours, even during break times, was understood as illicit behaviour that could be dangerous for them professionally by leading to them losing their jobs but could also pose a danger to others by putting their lives at risk through negligence or causing accidents. Like Paul, several respondents told scare stories of colleagues who had fallen asleep at work, been caught and had lost their jobs: It is pretty dangerous and I am sure I could lose my job if I got caught ... I know a couple at work that have fell asleep before ... one was woke up by a team leader, so he was sacked. Those working in occupational roles where they were not directly responsible for the safety of others did not problematise workplace sleepiness and associated performance deficits to the same extent. Like Edie, they described having witnessed colleagues falling asleep at work and thought that if they were to lose concentration or fall asleep for a short period of time it would not be 'a big deal' and may even be a source of amusement for their colleagues: I get a bit sleepy on the later shifts, but because it is quieter you don't really have to stay as alert … It wouldn't be a big deal [if I fell asleep] I don't think, and some people have done it before. So you just fit in with the crowd to be honest. As Moe, a delivery driver, explains, shift workers have to fit their sleep times around their work schedule and other social demands. Respondents described sleeping for shorter durations than they would like, catching up on sleep by taking a napa 'planned period of sleep' or sleeping for longer periods on their days off: I find with working the shifts I work, you've got to sleep in the afternoon because if you don't, then you will feel knackered the next day, because you'd be going to bed at night, but still not getting enough sleep. [If] after work, you've had a couple of hours sleep then, I don't know, you can have a meal and go to bed later on. You need that bit in the afternoon. It was regularly stated that shift workers do not sleep well and this seemed to be taken for granted to a large extent. While some of those interviewed held 8 hours sleep as a benchmark, for the majority, 5 to 6 hours was generally perceived to be a more realistic duration and 'enough sleep' for them as individuals to be able to function adequately the next day. Conceptualising normal sleep as a 'solid' period of time taken during the night, shift work was thought to result in 'broken' sleep, which often had to be taken during the day. As can be seen in Karoline's account below, respondents considered that broken sleep had a more negative impact on the way they felt rather than changes to sleep duration or timing: I would rather have 4-5 hours good sleep than I would 8 hours broken, because I find that if it is broken sleep it doesn't matter how long I have, I still feel as tired. So I always count myself as a good night's sleep is 4-5 solid hours. In addition to trying to get one's body to sleep during the day when working a night shift, adjusting back to a 'normal nocturnal pattern' of sleep was something that had to be worked at: I will make sure that I don't go to bed during the day if I know I've got to try and get myself back to a normal nocturnal pattern. I will try and make myself as tired as possible and then wait to go to bed until I'm absolutely shattered so I'm tired and therefore sleep all night long. Respondents discussed how fluctuating working hours often left them feeling exhausted, making it difficult for them to adjust back to normal daily rhythms outside the workplace in order to fulfil their other roles and responsibilities as parent, spouse and friend: I do [see benefits of working shifts], but I think they're far outweighed by the costs for me ... I've just finished working 12 days in a row and it just gets on top of you and, sort of, makes it really hard to just enjoy like, you know [your time off] … So, yeah, effect on family and social life. To summarise, respondents described sleeping during the daytime, afternoons and evenings as well as during the nightsometimes work permitting and sometimes not. Their accounts reveal how sleep timing and duration are negotiated to fit around the demands of work time, as collectively they describe what Williams has referred to as 'anarchic' or 'anomic' sleep patterns, that is, sleep patterns that fall outside our normative ideals. Their accounts also signify the difficultly shift workers face in getting their bodies to perform in line with their social requirements, highlighting the disjuncture between the biological sleep drive and social sleep time that results from performing shift work. The limits of bodily agency are clear here as typically, these respondents considered themselves to have very little control over how well they sleep and how long they are able to sleep for. --- Students and flexible sleep In the student data, the day and night worlds also seemed to merge, with respondents reporting both study time and social activities that spanned the full 24 hours of the day 7 days a week. Like Susie, it was usual for students to report working outside the traditional working day, studying late into the night or early in the morning, fitting their work around these other demands of the student lifestyle: A few nights a week, I will be working until just before I go to bed because all my housemates are in bed, there's no distractions, no-one's calling you and there's not really much else to do ... I don't really do all-nighters as such, but between 2 and 3am usually. A small number of students reported doing 'all-nighters'; however, this pattern of working was commonly adopted by students when they felt under pressure, such as before a deadline or an exam. Alongside studying, having a good social life that included being an active member of clubs and societies, nights out and spending time with friends was also considered important, particularly for their emotional wellbeing and successful adjustment to living away from the family home. In contrast to the shift workers' accounts and the lack of bodily agency they conveyed, the students gave a general sense of active agency in their perceptions that they were in very much in control of their sleep: 'I can just stay up till whenever, so I can do work and then switch off when I feel like it . In addition to talking about sleep in functional terms, as discussed previously, there was also a strong sense in the student data that spending time sleeping was not a priority for them. Some students went as far as to refer to sleep as being a waste of their time, and it was commonly presented as something that, if cut back on, would give them more time for other activities. Despite acknowledging that they might need more sleep, like Becky, most said they usually got between 4 and 7 hours sleep a night, catching up by sleeping longer in their free time, on the weekends or in the afternoons when they did not have any other work or social commitments to attend to: It's not often I'll deliberately go to bed when there's something else I want to do, because I want more sleep. I would usually just go out anyway and get through it. I'd just make sure I went to sleep early the next night or maybe have a nap in the afternoon or something. In a similar way to which the shift workers described having to fit their sleep time around their working patterns, students described modifying or customising their sleep patterns to fit around their studies and social engagements. Sleep was taken primarily during the night, but also during the mornings, afternoons and evenings in the form of short naps. Napping was discussed as an established practice and one that was engaged in without too much deliberation. Many respondents described napping during the day as a strategy for promoting alertness or catching up on sleep if they felt that they had not had enough sleep the night before. In this way, periods of sleep and wakefulness were typically thought of as flexible and under their control. They choose when they go to sleep and how long they sleep for, prioritising their waking life and negotiating their sleep time around both work-related and social activities. Accordingly, students' sleep patterns could also be described as anarchic or anomic , falling outside wider social norms and standards where normal sleep takes place in private, in a bed during the night and in one 8-hour block. Despite conceptualising sleep timing and duration as being flexible and under their control, all the students interviewed reported having experienced difficulties getting to sleep and staying awake and alert at socially desirable times. Typically, these difficulties were not considered as being problems with their sleep per se, but as symptoms of other problems or factors such as stress, being in emotional turmoil or being too active before bedtime. Like Stephen, respondents often blamed themselves for the difficulties they had experienced, considering their behaviour to be a causal factor in the development of the problem: I think it would be my own fault if I wasn't alert, it would be because I'd not been getting enough sleep and that's my decision. While some students linked daytime sleepiness to a lack of sleep the night before, others felt that how much or how well they had slept the night before had little impact on how awake and alert they felt the following day. Instead, falling asleep or feeling sleepy in the day was constructed as a normal response to boredom, lack of activity or stimulation and socio-environmental factors: I once got here and I was really, really tired and I thought I wouldn't survive the day. But then the lectures were really interesting and I was quite alert in the afternoon. When I am bored I usually get tireda lot of people would. As discussed in the previous section, students thought of sleep as being important, in terms of biological need and for their physical and cognitive functioning. However, despite this, their accounts reveal how they cut back on their sleep time in favour of work demands and social activities. While both groups describe their attempts to fit in an adequate amount of sleep per 24-hour period, the student's accounts reveal how this group have a greater opportunity for flexibility in their approach. This flexibility is the key in allowing them to adapt their sleeping patterns in ways that are favourable to maintaining a work-social life balance. In contrast to the shift worker data, biological control over the sleep-wake cycle and reference to the body's internal clock was not a significant feature of student discourse. However, limits to agency, in relation to sleep quality, sleep time and sleep duration were also evident in discussions of the accounts they gave. It is clear that we cannot easily make our bodies sleep or stay awake at socially desirable times, so therefore turn to a range of different strategies to aid us. These are discussed further in the next section. --- Managing sleep and wakefulness Typically, students conveyed a sense of active agency in managing their states of sleep and alertness. Consequently, sleep problems were rationalised as a normal part of everyday life and were not pathologised or medicalised in their accounts. Similarly, despite the huge impact on sleep each of the shift workers described in their accounts, in general, those interviewed did not consider the problems they had experienced or were experiencing with sleep to be 'real problems' that would warrant medical attention. This can be seen in Hamish's account below: I probably wouldn't seek medical help, because I would just say to myself, 'Well, it's only going to be for this couple of weeks and then I've got a few days off, or then I've got a weekend', so it would probably take quite a lot for me to ask for help ... basically [I just manage it by myself]. In a similar stance to that taken by Hamish, respondents from both groups said that they would seek medical advice for sleep problems only if the problem persisted for a prolonged period of time and they could not resolve it in other ways. As seen in the data extract below, many respondents were opposed to taking sleeping pills and thought this was all medical professionals would be able to offer them: I wouldn't think of going to the doctor to be honest. They'd probably just say pretty much what's on my mind like 'You shouldn't be doing this before' and everything. I wouldn't want to end up on sleeping tablets, because I think it'd disrupt it even more, because if I then decide to go off them and whatever, I just don't want anything like that. It's not something I'd want. Instead, most respondents said they would attempt to manage or cure their sleep problems themselves before going to see their doctor. They would do this in various ways: by looking on the Internet for advice, trying over-the-counter remedies, speaking to a family member or trying to change social or environmental factors that they thought were causing the problem. --- Managing sleep As with the women interviewed by Hislop and Arber , a range of personalised strategies to aid the onset of sleep and promote alertness were discussed. Respondents reported reading, having a warm drink or a bath, doing some mild exercise or watching television as an aid to 'switching off', with varying levels of success. Some respondents reported self-medicating, using OTC pharmaceutical products, homeopathic remedies, antihistamines and alcohol as sedatives to help them to sleep when they were finding it difficult. Use of these substances was a prominent feature of the shift worker data, and also present in the student data, although the rationale for use of these products did differ somewhat between groups. In the extract below a nurse who works a rotating shift pattern explains how she uses an OCT sleep aid to help her sleep after a night shift, justifying this action through appeal to the 'design' of her 'body clock': I find that my routine is I have to go straight to bed as soon as I get in off my night shift and sometimes I might take things like Nytol to help me get to sleep because I find it so much harder to sleep in the day because my body clock isn't designed to sleep in the day. In contrast, Joseph explains his use of an OTC product as being a way to help him to relax and calm down when he is feeling under stress in order to aid the onset of sleep: I'm actually taking some Kalms pills after meals at the moment and that's basically to relax you and I have to admit that it's helping me a bit with my sleep at the moment, so it's basically putting my body in a calmer state, therefore my mind in a calmer state, so I have been able to get a bit more sleep since taking this medicine. --- Promoting wakefulness All respondents thought that being busy, interacting and talking with people and keeping the body and brain active, although tiring, was the most important thing to keep them awake, alert and attentive in the workplace or while at university. Other ways of promoting wakefulness included taking breaks, getting a change of scenery, getting some fresh air, having a shower, browsing the Internet and watching television. Respondents reported drinking caffeinated drinks and energy drinks, eating sugary foods, taking caffeine pills and smoking cigarettes specifically to promote alert wakefulness: I eat lots of chocolate to stay awake and drink lots of coffee and sometimes I take bottles of Red Bull and Lucozade and just hope that the patients just keep pressing their buzzers to keep us on the ball. Consumption of caffeinated products as an aid to promote wakefulness or to delay sleep was a prominent feature of the data. For example, in the extract below, Mike describes how he uses coffee as a wake-promoting substance, despite not liking the taste of it. He uses caffeine to extend wakefulness/delay sleep onset when he feels under pressure, forsaking sleep in order to get his work done: I drink lots of caffeine ... a few extra cups of tea or if I am feeling really pressured coffeeeven though I can't stand the taste, but it keeps me awake more. That's usually what I do and just try and stay up longer, even if it is a case of getting not enough sleepjust to get [my work] done. One of respondents interviewed gave an account of a colleague who used illegal substances to stay awake during the night shift, but stressed this was not the norm in his place of work: Everyone's tired but really they just keep going ... Some have probably taken stuff ... it's probably a rarity rather than a common thing ... one lad was sacked last week ... found him in the toilets, high as a kite ... he was taking stimulants, he couldn't control them, he disappeared for hours hiding somewhere and eventually they checked the toilets, he was in one of the cubicles out of his head, so he got sacked on the spot. Collectively, respondents reported using a wide range of strategies, techniques, technologies and practices to encourage, overcome or delay sleep and boost, promote or enhance wakefulness/alertness in their daily lives. Despite the different attitudes towards and experiences of sleep evident between both groups, the ways in which respondents described managing these cognitive states were strikingly similar. --- Discussion and conclusions Recent studies have demonstrated how various social factors including age, lifestyle choices, working patterns, family structures and gender impact upon sleep patterns and practices . Sociological studies have been informative about people's own definitions and normative expectations of what they consider to be ideal, adequate or enough sleep. However, sociological work on the experiences of sleep in different sections of society is still in the early stages. This article contributes to this emerging literature by exploring the sleeping practices and subjective experiences of sleep of two social groups: shift workers and students. It highlights the complex ways in which working patterns and social activities impact upon experiences and expectations of sleep in our wired awake world. Shift work is one obvious area of modern life where biological and social dyssynchrony or the misalignment between biological and social times can be observed as working hours span the day-night divide. Although the label of shift worker does not signify a homogenous group and the working patterns and sleeping practices of those interviewed were varied, we can see in the shift workers' accounts that they all have to work to fit their sleep time around their work time in attempts to foster an effective and workable sleep routine. Often they have little success in doing so as their bodies remain 'recalcitrant' , making it difficult for them to sleep in the daytime and leaving them feeling as though they are not able to spend enough time asleep. Shift workers cannot follow a set pattern of sleep and wakefulness, which results in 'broken sleep'. Although the body might be tired and the individual might feel sleepy in the workplace, often the shift workers must go against their biological clock to stay awake and alert to do their job or face being sacked. In Nettleton et al.'s study of the sleeping practices of heroin users, an inversion of sleeping patterns, so sleeping during the daytime rather than at night, was compatible with drug users living a life that is separateboth spatially and temporallyfrom non-users. This sleeping pattern had its benefits, allowing the drug user to 'reside in their own space' ) and therefore helping them avoid the need to maintain troubled social relationships. In contrast, in shift workers accounts we can see that the effect of shift work on sleeping patterns has the opposite impact on the participants' lives. The anomic sleeping patterns they are forced to adopt due to their work patterns are constraining at both a biological and social level. Lack of sleep impacts on their ability to function and perform in their role at work whereas socially, their sleeping patterns can disrupt family life by making it difficult for them to invest the time they would like into their social relationships and putting a strain on them. Fluctuating working hours also make it difficult for those who work shifts to adjust back to 'normal' daily rhythms outside the workplace in order to fulfil their other roles and responsibilities as parent, spouse and friend. Students do not have the same constraints imposed on their time as shift workers. However, they too describe anomic sleep patterns and 24-hour lifestyles that prioritise social demands and activities over spending time sleeping. Students generally perceived themselves to be in control of their sleep and describe 'customising' their sleep patterns by napping during the daytime and altering their sleep timing and duration at night to fit around the demands of their study and social lives. We can speculate that perhaps students normalise their sleep patterns once they leave the university context, entering paid work and experiencing further transitions across the life course, such as cohabitation, marriage and parenthood . However, the student data raise questions about the extent to which having an 8-hour block of nocturnal sleep is thought of as the only normal way of sleeping. As the data show, broken sleep and napping across the 24-hour period are becoming more normalised practices in different sections of society, perhaps signalling a wider shift or greater flexibility in perceptions and expectations about what normal sleep is in an increasingly 24/7 world. In particular, the data around napping emphasise the complex politics of sleep . Choosing to take a nap in your own time was generally perceived as an acceptable and everyday practice in the student data. However, perceptions of sleeping in the workplace were varied, ranging from it being an officially sanctioned practice in some occupations to a risky and illicit behaviour in others. Although periods of sleep and wakefulness were understood as embodied experiences partly under biological control, the acts of 'going to sleep' and 'staying awake' described were acutely social. Collectively, the respondents' accounts highlight what Williams and Crossley refer to as an 'involuntary aspect of sleep' and demonstrate the limits of agency here as the body often remains recalcitrant, defying the individual's efforts to enter or leave sleep at socially desirable times. Respondents described their daily rituals and routines, highlighting the 'personalised strategies' they have developed in order to achieve sleep, and to wake up and maintain alertness at the times their work or social schedules dictate. Similar to respondents in other studies , these respondents described how they would use and rely on various techniques and technologies to facilitate the transition to their desired state at the desired time. The analysis presented demonstrates how getting to sleep during the daytime and staying awake at night or for extended periods takes considerable negotiation, management, effort and planning on the part of the individual. It was evident across the data how much effort goes into getting some sleep or conversely, staying awake and alert in the workplace or at university at times that go against the dictates of our biology. The accounts given show the negotiations we all have to make between pragmatic concerns over getting enough sleep to be able to function sufficiently the next day and what is practical and possible in terms of the demands of our waking lives, working our requirements as best we can around the biological rhythms of sleep and wakefulness that are programmed into each of us. With the increasing number of professions required to work shifts it may not be possible for those who cannot tolerate shift work to simply opt out. Williams has argued, drawing on the work of Hochschild and Venn et al. , that when household chores, childcare activities and emotional labour are taken into account, in one sense we can all be considered as shift workers juggling the demands of working and family life, often at the expense of sleep. When we consider the 24/7 lifestyles of students and the ways in which sleep is already being customised to fit around our increasingly busy lifestyles, we can see how sleep is being relegated in the order of priorities, despite warnings from sleep experts about the health implications of this. The impacts that sleep deprivation resulting from working patterns have on family life and personal identity have not been fully explored in this study and warrant further sociological attention. By uncovering experiences of and attitudes towards sleep, in addition to the rituals and routines and the array of tools and techniques already used on daily basis to control sleep and promote alertness in everyday life, we can gain a better understanding of the complex politics of sleep in contemporary society and how perceptions, behaviour and attitudes towards sleep are changing in the wake of an increasing social shift towards 24-hour living. Address for correspondence: Catherine M. Coveney, Department of Sociology, University of Warwick, Coventry CV4 7AL, UK e-mail: [email protected] --- Notes 1 Empirical work involved documentary and media analysis , using 40 qualitative interviews with leading scientists and clinicians involved in sleep research and management and two potential user groups, students and shift workers. 2 Every fourth student was selected for interview from the list of 80 students who initially responded to an e-mail to participate in the study. Out of the 20 students who were contacted, 14 agreed to participate in the interview
This article contributes to literature on the sociology of sleep by exploring the sleeping practices and subjective sleep experiences of two social groups: shift workers and students. It draws on data, collected in the UK from 25 semistructured interviews, to discuss the complex ways in which working patterns and social activities impact upon experiences and expectations of sleep in our wired awake world. The data show that, typically, sleep is valued and considered to be important for health, general wellbeing, appearance and physical and cognitive functioning. However, sleep time is often cut back on in favour of work demands and social activities. While shift workers described their efforts to fit in an adequate amount of sleep per 24-hour period, for students, the adoption of a flexible sleep routine was thought to be favourable for maintaining a work-social life balance. Collectively, respondents reported using a wide range of strategies, techniques, technologies and practices to encourage, overcome or delay sleep(iness) and boost, promote or enhance wakefulness/alertness at socially desirable times. The analysis demonstrates how social context impacts not only on how we come to think about sleep and understand it, but also how we manage or self-regulate our sleeping patterns.
Introduction A space-time suicide cluster can be defined as multiple suicides that occur closer to each other in time and space than would be expected based on the expectation of the community or statistical chance . One single suicide cluster could have a tremendous impact on the community and lead to serious concerns of imitation, i.e., further occurrences of suicide ). Previous studies of clusters of suicidal behaviour have mainly focused on suicide deaths , although non-fatal suicidal behaviour may also occur as part of a cluster of suicide deaths, and the incidence of non-fatal suicidal behaviour can be 20-fold higher than that of fatal events . Not including non-fatal suicidal behaviour in the analysis may lead to many clusters of suicidal behaviour being overlooked. --- Lu et al. Two previous studies have investigated clusters of suicidal behaviour by including both suicide deaths and non-fatal suicide attempts. Too et al. analysed the spatio-temporal clusters of hospital admissions for suicide attempt and suicide deaths separately using data from Western Australia. The study identified a small proportion of suicide attempts and suicides occurring within clusters, and the clusters of suicide attempts and suicides were geographically close to each other. The same study also found an association of cluster-related suicide attempts with several area characteristics such as low socioeconomic status, the proportion of people who had changed addresses in the previous year, and the proportion of indigenous people. Another study by Too et al. focused on young people aged 15-24 years and used data for suicidal acts from Western Australia and New South Wales for two periods. The study showed that cluster-related suicidal acts accounted for 0-3% of all events over the periods studied. The two previous studies used aggregated data for suicide attempt and suicide by the month of occurrence and geographic area, which has an average population size of 10,000-16,000; the analysis used area centroids as a proxy for the person's place of residence ). Calculating risks based on artificially defined areas might result in the modifiable areal unit problem, which means that the choice of aggregation area unit might influence the results of statistical tests and cause biases . By contrast, a scan statistic model that utilizes the exact location information , such as Space Time Permutation Scan Statistics , is available but was rarely used in past research to detect the clusters of suicidal behaviour, with only two exceptions . Moreover, the two Australian studies used hospital admission data for suicide attempt, not including emergency department presentation data, and the residential address information was missing for a significant proportion of suicide attempts and suicides -both could result in potential under-detection of suicidal behaviour clusters. This study aimed to investigate the space-time cluster of suicidal acts in two cities in Taiwan. Specifically, we examined the prevalence of space-time clusters of different suicidal acts and the characteristics of cluster-related suicidal acts compared with those not in clusters. To bridge the gaps in previous literature, this study included emergency room presentations of self-harm and used data with fine-grained spatial information. We used the term 'self-harm' when referring to selfinjury or self-poisoning, irrespective of the motivation and degree of suicidal intent . --- Method --- Data Taipei City and New Taipei City are both in northern Taiwan . New Taipei City is the surrounding area of Taipei City, while it is officially a city of its own; both cities are part of the Taipei Metropolitan area. Self-harm and suicide data for Taipei City and New Taipei City were from two separate research projects supported by respective city governments. Self-harm data for Taipei City were obtained from the city's selfharm surveillance system. Details of the surveillance system were described elsewhere . In brief, all of the 26 hospitals in Taipei City were required to report self-harm presentations to emergency departments by uploading a form with the patients' basic demographic information, current address and the date and method of self-harm onto the system, so that the aftercare workers can contact the patients and provide aftercare. Suicides for Taipei City were identified from the national causeof-death data files using the following International Classification of Diseases, Tenth Revision, codes: X60-X84 for certified suicides; Y10-Y34 for undetermined deaths; X48 for accidental pesticide poisoning and W75, W76, W83 and W84 for accidental suffocation . In keeping with findings from other countries , previous studies from Taiwan showed that many of these undetermined and accidental deaths were likely to be misclassified suicides and were therefore included in the study. For simplicity, we used the term 'suicide' when referring to both certified and possible suicides combined in the paper. Self-harm and suicide data for New Taipei City were obtained from a project investigating the geographic distribution of selfharm and suicide in the city based on data from Taiwan's National Suicide Surveillance System , which included data for self-harm episodes, suicides and suicidal ideation presenting to emergency departments, the police, firefighters, or other governmental agencies . Patients' basic demographic information, contact address, and the date and method of the suicidal acts were uploaded onto the system. Similar to Taipei City, suicide data for New Taipei City were extracted from the national cause-of-death data files to capture suicides not reported to the NSSS as well as possible suicides . Supplementary Figure S1 shows the flowcharts to identify selfharm episodes and suicides for the study. A total of 5,291 and 20,531 self-harm records and 1,406 and 2,329 suicides in Taipei City and New Taipei City, respectively, were included in the analysis. The process to identify eligible self-harm episodes and suicides was described in detail in the Supplementary materials. The Taiwan Geospatial One Stop was used to identify the geographic coordinates for each suicidal episode based on the residential address. By adopting the coordinates of the exact address rather than using the centroid of its administrative district, the cluster identification results would not suffer from aggregation and therefore cluster location accuracy was kept for precise identification. When comparing the area-level characteristics between cluster-related and unrelated episodes of self-harm and suicide, each suicide or selfharm episode was assigned to one of the 'neighbourhoods' based on the geocoded coordinates. Population data at the neighbourhood level for both cities were extracted from the household registration data. Data for median household income were extracted from the Income Tax Statistics. --- Statistical analysis STPSS was used to identify spatio-temporal clusters of self-harm episodes, suicides, and both combined in the two study cities over the respective time periods. The STPSS was adopted as this approach allows the use of point data to identify clusters with more exact location information. STPSS uses a Poisson-based likelihood to identify clustering within a scanning window by assessing whether the number of observed events occurring inside the window is greater than that expected . The window is a cylinder with different radiuses and heights, which, respectively, indicate the cluster area and duration. The window that has the maximum likelihood ratio between the observed and expected numbers of cases is considered the most likely candidate for a space-time cluster. The temporal information used in the analysis was the day of the suicidal acts, and the spatial information was the geographic coordinates of the addresses. The maximum spatial and temporal size of the cluster was set at 10% of the population at risk and 1 year, respectively, based on previous research . Overlapping of clusters was allowed if less significant clusters did not centre in more likely clusters. The Monte Carlo method with 999 replications was used to generate p-values. Clusters with a p value less than 0.10 were considered as possible clusters in the study. SaTScan version 9.6 was used to conduct the spatio-temporal cluster detection analyses . All-age and age-specific analyses were conducted. Consistent with previous research in an Asian population , six different age groups were considered . We conducted a robustness test to examine the impact of selfharm repetition. We intended to identify space-time clustering of suicidal acts of different individuals rather than repeated episodes by the same individuals. Similar to the approach used by Too et al. , a two-stage analysis was conducted. In the first stage, all suicidal acts, including repeated self-harm episodes, were included in the space-time cluster detection analysis. If any detected clusters contained repeated self-harm episodes by the same individuals, one of the episodes was randomly chosen, with the others being excluded, and a cluster detection analysis was re-run to check for evidence of a similar spatio-temporal cluster. The re-run was repeated multiple times according to the maximum number of individual repetitions in the target cluster. A cluster passed the test if a similar cluster covered more than 50% of the space-time period and individuals of the target cluster in any of the re-runs. Final cluster detection results were plotted using ArcGIS 10.7. The cluster detection analysis revealed some groups of suicides having the same address and date of occurrence. These are likely to be 'suicide pacts' , i.e., where several people agree to take their lives together at the same time. News reports of suicides were searched and descriptions were compared with these possible suicide pacts regarding sex, age, date of death, and address to determine if these were actually suicide pacts. The etiology of suicide pacts would differ from suicide clusters, and thus they were not included in the analysis of the characteristics of cluster-related vs cluster-unrelated episodes. Logistic regression analysis was conducted to investigate the characteristics associated with cluster-related episodes of self-harm and suicide. The outcome was a binary variable indicating whether the suicidal episode was in an identified cluster. For individuals with multiple self-harm episodes, we included only one episode for cluster-related cases and one episode for cluster-unrelated episodes, both chosen randomly. We, therefore, excluded a total of 893 self-harm repetition episodes in Taipei City and 5,376 self-harm repetition episodes in New Taipei City from the analysis. Individual-level characteristics included sex and age , while area-level characteristics include neighbourhood population density and median household income . Both unadjusted and sex/age-adjusted odds ratios and their 95% confidence intervals were estimated. We accounted Lu et al. for within-neighbourhood correlation using generalized estimating equations. The logistic regression analysis was conducted using the geepack package in R software . --- Results Table 1 shows the number and rate of self-harm and suicide, as well as the ratio between the number of self-harm episodes and suicide, overall and by sex and age in the two cities over the respective study periods. During 2004-2006, there were a total of 5,291 selfharm episodes and 1,406 suicides among people aged 10+ years in Taipei City . During 2012-2016, there were a total of 20,531 self-harm episodes and 2,329 suicides among people aged 10+ years in New Taipei City . The annual age-standardized selfharm and suicide rates were 75.4 and 20.1, respectively, in Taipei City; the corresponding rates were 113.4 and 12.9, respectively, in New Taipei City in the study periods. In both cities, self-harm rates were higher in females than males, while suicide rates were higher in males than females. Self-harm rates were higher in younger groups ; by contrast, suicide rates were highest in the oldest group aged 60+ years. The ratio between self-harm and suicide was highest in the youngest group aged 10-19 and decreased with age. --- Cluster detection using space-time permutation scan statistics Table 2 shows a summary of identified clusters. Two self-harm clusters , four suicide clusters and two self-harm and suicide combined clusters were identified. These identified clusters all passed the robustness test. Additionally, three suicide pacts were also found. In Taipei City , the two self-harm clusters were identified in the age groups 10-19 and 20-29 years . The suicide cluster was identified in the age group 50-59 years . Three clusters were identified when the self-harm and suicide data were combined; of them, two were the same as clusters 1 and 2, respectively. The additional cluster was identified in the age group 60+ years . In New Taipei City , no self-harm clusters were identified. Three suicide clusters were identified in the age groups 20-29 , 40-49 and 40-49 years and age-specific analyses of suicides as well as suicides and self-harm episodes combined. P A was a suicide pact consisting of four family members who died by charcoal burning in a car. The exact start and end dates of the suicide pact were removed to prevent individuals from being identified. The suicide pact was identified in the all-age analyses of suicides as well as suicides and self-harm episodes combined. P B included three suicides; of them, two individuals died by charcoal burning in a car . The exact start and end dates of the suicide pact were removed to prevent individuals from being identified. 0.8% of all suicides in this age group). One cluster containing five self-harm events and three suicides was identified in the age group 20-29 ; this cluster contained three of the suicides in suicide cluster A. The clusters in both cities mostly occurred over a short time period with a radius of less than 1 km, with only one exception spanning 102 days with a radius of 8.55 km in New Taipei City . The number of events included in each cluster accounted for only a small percentage of all suicidal acts. Overall, self-harm events, suicides, and self-harm and suicides combined in the identified clusters accounted for only 0.05% , 0.59% , and 0.08% of the total number of events in the three groups, respectively. Figure 2 shows the geographical distribution of the identified clusters. In Taipei City, the identified clusters were located in the west and southwest areas. In New Taipei City, clusters A and D were close to each other geographically. --- Suicide pacts A total of three suicide pacts were identified in the cluster detection analysis. One suicide pact 2a and b for detailed data for these clusters. Taipei City *Clusters 4 and 5 were not included in this map because they were the same as clusters 1 and 2, respectively. **The serial numbers assigned to the self-harm episodes or suicides in the insets were based on the chronological order of occurrence, determined by the dates on which each individual self-harm episode or suicide took place. For example, the 1st self-harm episode in the 1st self-harm cluster was labelled as '1-1'. For two or more self-harm episodes or suicides that occurred on the same day, they were given an additional letter, for example, the 2nd, 3rd and 4th self-harm episodes, which all occurred on the same day, of the 1st self-harm cluster were labelled as '1-2a', '1-2b' and '1-3c', respectively. ***Self-harm episodes 1-2b and 1-2c occurred at the same address on the same day. This could be a possible self-harm pact, but it could not be confirmed due to a lack of detailed information. New Taipei City *Cluster D included five self-harm episodes and three suicides; the three suicides were also included in cluster A, which contained four suicides. **The serial numbers assigned to the self-harm episodes or suicides in the insets were based on the chronological order of occurrence, determined by the dates on which each individual self-harm episode or suicide took place. For example, the 1st suicide in suicide cluster A was labelled as 'A-1'. For two or more self-harm episodes or suicides that occurred on the same day, they were given an additional letter. For example, the 10th and 11th suicides of the suicide cluster B occurred on the same day and were labelled as 'B10a' and 'B10b', respectively. was identified in Taipei City . A search of news reports revealed that the suicide pact included three family members who died by hanging and self-poisoning , respectively, in the same address. The pact was consistently identified in the allage and age-specific analyses of suicides as well as suicides and self-harm episodes combined. Two suicide pacts were identified in New Taipei City . A search of news reports revealed that suicide pact P A consisted of four family members who died from carbon monoxide poisoning by burning barbecue charcoal in a car. The three suicides in suicide pact P B included one couple who died together by burning charcoal in a car, i.e., a suicide pact, while the third suicide was unrelated to the couple and occurred on the next day. A sensitivity analysis that counted the couple as one single suicide event showed no more statistical evidence of this suicide cluster. --- Characteristics of cluster-related vs unrelated self-harms episodes and suicides Based on combined data from Taipei City and New Taipei City, people who self-harmed or died by suicide as part of a cluster were more likely to be male and younger than their cluster-unrelated counterparts . Sex/age-adjusted ORs were 2.22 for males and 2.72 for 10-to 29-year-olds . No association was found between cluster-related selfharm episodes and suicides and neighbourhood median household income or population density. --- Discussion Space-time clusters of suicidal acts were relatively rare; self-harm, suicide, and self-harm and suicide combined accounted for 0.05%, 0.59%, and 0.08% of the respective groups of suicidal acts. The analyses using combined data for non-fatal events and fatal events identified additional clusters compared with analyses based on self-harm or suicide data alone. People who self-harmed or died by suicide as part of a cluster were more likely to be male and younger than cluster-unrelated cases. --- Strengths and limitations This is the first study to identify space-time clusters of self-harm, suicide, and self-harm and suicide combined using fine-grained event date and residential address information. The availability of point data could achieve high geographical accuracy by allowing cluster identification using the space-time permutation model, which is more specific than the discrete Poisson model based on aggregate area data used in previous studies. The data used in our analysis were comprehensive; around 90% or more of the eligible episodes had complete residential address information and were included in the analysis. There are limitations to this study. First, we only considered the proximity of space and time between individuals and could not analyse social network connections . Recent studies used data from the police and coroner reports to investigate the social links between cluster-related suicides ) or interviews with people who self-harmed to investigate the link between self-harm in these individuals and previous cluster-related suicides . Second, our analysis comparing cluster-related and unrelated cases did not include information on other risk factors of suicidal behaviour such as drug or alcohol abuse and history of self-harm, which may contribute to the clustering of suicidal behaviour . Third, the analysis of cluster characteristics had limited statistical power due to the small number of cluster-related self-harm Lu et al. episodes and suicides being identified. Fourth, the data covered two distinct periods in Taipei City and New Taipei City because of data availability. Furthermore, Taipei City had a lower ratio of self-harm episodes to suicides than New Taipei City; this may indicate that self-harm episodes could be under-detected in Taipei City, and this could impact cluster detection. Lastly, the spacetime permutation model did not adjust for population number. If there was a large change in the population number within a short period of time in an area, in contrast to constant population in other areas, this might lead to false negative or positive results of cluster detection . However, in our analysis, we set the maximum temporal size of the cluster at 1 year, and this would limit the impact of change in the population number over time, if any. Furthermore, our data showed relatively stable neighbourhood population numbers during the study period. There was no evidence of a large change in population number in neighbourhoods where the suicidal behaviour clusters were identified . --- Comparison with previous studies Our results showed that the spatio-temporal clusters of self-harm and suicide were fairly uncommon. Previous studies from Australia and the UK applying the scan statistics method also indicated the rarity of the phenomena -spatio-temporally cluster-related suicidal acts accounted for only 0-3% of total self-harm events and/or suicides . A few studies showed a higher proportion of suicides occurring in clusters. For example, Sy et al. found that 13.5% of suicides in 10 US states with the highest suicide rates were in clusters. However, the finding may be associated with the study's relatively large time scale of aggregation when the scan statistics method was applied. In other words, the study identified clusters of suicides that were already grouped every 6 months, and this may lead to an inflated number of suicides being identified in clusters. By contrast, the time scale of aggregation was 1 day for our study and the UK study and 1 month for Australian studies . Another study from Spain indicated that 17.7% of suicides occurred in clusters ; however, the study was based on a small sample from a defined rural area, making it difficult to compare its result to those of other much larger studies. In a recent study from Hong Kong, 19.2% of self-harm occurred in clusters ; however, this study used data from a highly densely populated area with many high-rise public housing buildings, which may contribute to the space-time concentration of self-harm episodes that occurred in residents who lived in different floors and had no contacts with one another. In keeping with previous studies, our findings indicated that cluster-related suicidal acts were most likely to occur in males and younger people . In a study from Wales, UK, suicide clusters were only identified in the subgroup of individuals aged 15-34 years but not in the all-age analysis . The predominance of clustering of suicide in young people may reflect their greater susceptibility to identification with a model, which could be suicide by other young people or suicide by celebrities . Furthermore, we identified suicidal behaviour clusters in only age-specific analyses but not all-age analyses. The clustering of suicidal behaviour may be more likely to occur among people of a similar age rather than across age groups, as vulnerable individuals were more likely to identify with and be influenced by suicidal behaviour by people of the same age . In a recent study of suicide clusters in young people in Australia, Hill et al. found that 86% of suicides exposed to suicides of young people belonged to the same age group as the index case. However, past research on sex and age patterns mainly focused on suicide clusters. Too et al. recently examined the characteristics of self-harm only clusters and did not find increased risk in any specific sex or age groups. Future research is needed to determine whether the sex and age patterns differ in self-harm and suicide clusters. --- Implications Considering self-harm episodes and suicides together may identify more possible clusters of suicidal behaviour. Adopting advanced methodology such as the space-time permutation model and using data with fine-grained geographic information may allow identifying spatially exact clusters. Further research on the age and sex patterns of suicidal behaviour clusters and the transmission of suicidal behaviour within clusters can inform prevention and intervention plans. Supplementary material. The supplementary material for this article can be found at https://doi.org/10.1017/S2045796023000513. --- Availability of data and materials. The data were provided by the governments of Taipei City and New Taipei City, Taiwan. The authors were not permitted to share the data. --- Competing interests. We declare no competing interests. Ethical standards. This study was approved by the National Taiwan University Hospital Research Ethics Review Committee . The authors assert that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
Aims. Suicidal acts may cluster in time and space and lead to community concerns about further imitative suicidal episodes. Although suicide clusters have been researched in previous studies, less is known about the clustering of non-fatal suicidal behaviour (self-harm). Furthermore, most previous studies used crude temporal and spatial information, e.g., numbers aggregated by month and residence area, for cluster detection analysis. This study aimed to (i) identify space-time clusters of self-harm and suicide using daily incidence data and exact address and (ii) investigate the characteristics of cluster-related suicidal acts. Methods. Data on emergency department presentations for self-harm and suicide deaths in Taipei City and New Taipei City, Taiwan, were used in this study. In all-age and age-specific analyses, self-harm and suicide clusters were identified using space-time permutation scan statistics. A cut-off of 0.10 for the p value was used to identify possible clusters. Logistic regression was used to investigate the characteristics associated with cluster-related episodes. Results. A total of 5,291 self-harm episodes and 1,406 suicides in Taipei City (2004City ( -2006) ) and 20,531 self-harm episodes and 2,329 suicides in New Taipei City (2012)(2013)(2014)(2015)(2016) were included in the analysis. In the two cities, two self-harm clusters (n [number of self-harm episodes or suicide deaths in the cluster] = 4 and 8 in Taipei City), four suicide clusters (n = 3 in Taipei City and n = 4, 11 and 4 in New Taipei City) and two self-harm and suicide combined clusters (n = 4 in Taipei City and n = 8 in New Taipei City) were identified. Space-time clusters of self-harm, suicide, and self-harm and suicide combined accounted for 0.05%, 0.59%, and 0.08% of the respective groups of suicidal acts. Cluster-related episodes of self-harm and suicide were more likely to be male (adjusted odds ratio [aOR] = 2.22, 95% confidence interval [CI] 1.26, 3.89) and young people aged 10-29 years (aOR = 2.72, 95% CI 1.43, 5.21) than their cluster-unrelated counterparts. Conclusions. Space-time clusters of self-harm, suicide, and self-harm and suicide combined accounted for a relatively small proportion of suicidal acts and were associated with some sex/age characteristics. Focusing on suicide deaths alone may underestimate the size of some clusters and/or lead to some clusters being overlooked. Future research could consider combining self-harm and suicide data and use social connection information to investigate possible clusters of suicidal acts.
Introduction Since the COVID-19 outbreak, anti-Asian racism and xenophobia has been spurred in the United States, and violent attacks against people who appear to be Asian have been documented [1,2]. The growing discrimination against the Asian community, combined with multifaceted pressures from the COVID-19 crisis, can make Asian people more vulnerable to mental health problems. Recent work has provided insights into the deteriorating impact of COVID-fueled discrimination on Asians' mental health conditions [3,4], but it leaves two important gaps. First, Asians were more likely to use social media for COVID-19-related information than other media sources, thereby amplifying the possibility to encounter discrimination-related news reports or personal narratives [5,6]. However, there has not been sufficient attention toward how using social media to read, post, and talk about discrimination and racism associated with COVID-19 would relate to Asians' well-being. Second, worry emerges as a common emotional response among these individuals after having directly experienced discrimination and/or reading about personal stories shared on social platforms. Worry could negatively influence one's mental health, depending on the levels of exposure to racial discrimination. More empirical research is needed to fully explore these contributing factors to mental health outcomes, as Asian ethnic groups face lingering metal health consequences from the COVID-19 pandemic. In an attempt to empirically examine the psychological consequences of racial discrimination associated with the COVID-19 outbreak among Asian people in the United States, we looked into three factors related to discrimination during this period and examined their associations with depressive symptoms among US Asians. These factors included: experience of discrimination, worry about discrimination, and racism-related social media use during the COVID-19 outbreak. We also investigated whether the relationship between social media use and depression was contingent upon one's experience of and worry about discrimination. Racial discrimination is defined as a phenomenon wherein people are unfairly treated or disadvantaged because of their race or phenotypic difference [7]. This could occur in interpersonal interactions, at the workplace, in education settings, or in receiving services and justice [8]. In some worse cases, racial discrimination could take forms of hate crimes or physical attacks [9]. It is not a new phenomenon that the outbreak of an infectious disease could trigger discrimination against racial and ethnic minorities [10]. Several recent studies have documented the salient evidence that Asians in the United States have encountered increasing levels of racial discrimination since the COVID-19 outbreak [11,12]. A huge amount of research has provided empirical evidence that racial discrimination can have negative impacts on the well-being of the stigmatized [13][14][15]. Racial discrimination can likely damage well-being through the process where one feels being rejected or excluded by the society and thus finds it harder to take control of their lives [16]. The above-described findings were also applicable to the Asian population in the United States. [17][18][19]. Recent studies have found that racial discrimination against Asian people is negatively associated with psychological well-being among this group during the COVID-19 outbreak [20,21]. One study found that direct experiences of racial discrimination during this period were associated with higher levels of anxiety and depressive symptoms among Chinese American parents and youth [20]. Another study found that vicarious racism, defined as indirect experiences of discrimination experienced by hearing about or seeing racist acts against other members of one's racial group, was also associated with higher levels of depression and anxiety among Asian Americans [21]. Current conceptualizations of racial discrimination vary across literatures, but almost all attempt to measure it in a subjective way, asking about the perception of racial discrimination in cognitive, affective, and behavioral domains [22]. Some scholars explain that it is because most incidents of discrimination are subtle and hard to document [23]. Importantly, scholars have pointed out the necessity to differentiate two related but distinct constructs of perceived racial discrimination: one is the perception of discrimination actually encountered by oneself and the other is the general worry about the fact that oneself could be a potential target of racial discrimination in the future [24]. It is worthwhile to examine the two constructs' unique relationship with depression, as previous literature suggested that the two might have different psychological implications. Although experienced discrimination was consistently associated with poor well-being [20,21], the role of worry seemed less conclusive. Worry is a normal mental reaction to impending events in our lives, and it only poses a threat when it becomes persistent and less controllable [25,26]. Under some situations, it can be instrumental by motivating people to cope, to conduct more analytical thinking, and to take more goal-oriented actions [27,28]. In the current study, we included both direct experience of discrimination during the COVID-19 outbreak among our study participants, as well as their worry about being discriminated. Together, we proposed the following hypothesis and research questions: • Hypothesis 1 : Experience of discrimination would be positively associated with depression among US Asians during the COVID-19 outbreak. --- • Research question 1: How would worry about discrimination be associated with depression among US Asians during the COVID-19 outbreak? In addition to the experience of and worry about discrimination, social media also plays a role in US Asians' psychological well-being during the COVID-19 pandemic [19]. During the pandemic, racism-related content has become more visible on social media. A study found a nearly 10-fold increase of tweets containing "Chinese virus" or "China virus" in the week after former US President Trump mentioned this term on March 16, 2020, compared to the tweets in the week prior [29]. The sentiment analysis of these tweets suggested that the majority contained negative emotions, such as fear, sadness, anger, and disgust [29]. Another study also analyzed the sentiment of race-related tweets before and following the emergence of COVID-19 and found that the proportion of negative tweets referencing Asians increased by 68.4% from November 2019 to March 2020 [30]. Social media use during this period can thus expose Asian users to greater risk for mental health concerns. Incidental and frequent encounter with racist posts on social media might make racism-related information in memory particularly accessible, leading to a perceived social reality where being Asian is unsafe and devalued [31]. A study showed that social media exposure to COVID-related information was associated with higher odds --- Pan et al JOURNAL OF MEDICAL INTERNET RESEARCH --- XSL • FO RenderX of anxiety and depression among the public in China during the COVID-19 outbreak, after controlling for various demographic factors [32]. The authors attributed the findings to misinformation on social media and users' risk perception of contracting COVID-19. Although the interpretation is reasonable, for US Asians, engagement with COVID-19-related information on social media, which commonly included anti-Asian sentiments [29,30], may trigger another layer of fear-fear for becoming the target of discrimination or victimization [33]. Nevertheless, to our knowledge, no research has been conducted on how reading, posting, and talking about COVID-19-related racism on social media would relate to US Asians' mental health. To bridge the gap, we proposed the following hypothesis: • Hypothesis 2 : Racism-related social media use would be positively related to depression among US Asians during the COVID-19 outbreak. Finally, this study attempted to examine how the association between racism-related social media use and depression would be moderated by personal experience of and worry about discrimination. As posited in cultivation theory [34,35], the effect of media exposure on personal opinions and feelings would be moderated by personal experiences. They further proposed that the moderation effect could go in two different directions, which were defined as the mainstream effect and the resonance effect . The vulnerability-stress model also argues that the extent to which a stressful event could trigger a mental disorder would depend on an individual's vulnerability, which could be psychological, biological, or situational factors [36]. We considered depression as the result of the interaction between worry about discrimination and racism-related social media use. As mentioned above, worry is an emotional reaction to future uncertainties, which could play a positive role in problem-solving in some situations [27,28]. In our case, worry might buffer the influence of racism-related social media use on depression by motivating people to solve the problem. Meanwhile, it is also possible for worry to play a negative role in such relationships if it does not direct people to take positive actions. As the moderating roles of discrimination-related experience and worry remained unclear, we proposed the following two additional research questions: --- Methods --- Procedures A web-based, cross-sectional survey approved by the institutional review board was first created on Qualtrics and then distributed to qualified participants via Amazon Mechanical Turk in mid-May 2020. Eligible participants included those belonging to Asian ethnic groups and residing in the United States. The first page of the questionnaire was a consent form providing the participants with brief background on the study and information about anonymity, confidentiality, and compensation. The rest of the pages asked questions about demographic information, media usage, discrimination-related experiences and perceptions during the COVID-19 outbreak, and some psychological measurements. Attention checkers were included to ensure data quality. The survey took an average of 15 minutes to complete. --- --- Measurements --- Experience of Discrimination The 5-item Everyday Discrimination Scale [37] was adapted to measure how often the respondents had experienced discrimination since the COVID-19 outbreak. The scale ranged from 1 to 5 . The five items were as follows: "You are treated with less courtesy or respect than other people"; "You receive poorer service than other people"; "People will act as if they think you are dangerous"; "People act as if they are afraid of you"; "You are threatened or harassed." The item "People act as if they think you are not smart" from the original scale was changed as "People act as if you are dangerous" to better indicate the common bias against Asians during the COVID-19 pandemic. Cronbach α for this scale was .94 . --- Worry About Discrimination Participants were also asked to rate the extent to which they worry about the listed things in Everyday Discrimination Scale [37]. The items were changed to future tense since worry tends to be an emotion related to things that may happen in the future. Cronbach α for this scale was .96 . --- Racism-Related Social Media Use We created a 4-item scale to measure the extent to which the participants used social media to read, post, and talk about racism-related information associated with COVID-19 since the outbreak of the pandemic. The 4 items on this scale were as follows: "On social media, how much do you pay attention to and read about racism related to COVID-19?" "On social media, how much do you post or repost information and news about racism related to COVID-19?" "On social media, how much do you discuss racism related to COVID-19 with others through commenting?" and "On social media, how much do you discuss racism related to COVID-19 with others through private messaging?" A 7-point Likert scale, ranging from 1 to 7 , was used. Cronbach α for this scale was .85 . --- Depression A 10-item depression scale [38] was adopted to measure the level of depression among US Asians. Respondents were asked to rate how often they felt they "[C]ouldn't shake off the blues even with help from your family and your friends," for example. The scale ranged from 1 to 4 . After performing confirmative factor analysis, three reverse-coded items were removed . Cronbach α for this 7-item scale was .88 . --- Control Variables Respondents reported basic demographic information, including age, gender, marital status, education level, employment status, and income. In addition, self-identification as Chinese was also considered as a control factor because of the close connection between the COVID-19 outbreak and China. We also asked respondents whether their family incomes had been affected since the COVID-19 outbreak, as it has been documented as a key stressor during the pandemic [39]. --- Data Analysis To address the issues of measurement errors, we performed confirmatory factor analysis in Mplus by considering experience of discrimination, worry about discrimination, social media use, and depression as latent variables. The initial model fit was mediocre, and 3 reverse-coded items of the depression scale had low loadings . After removing these 3 items, the measurement model fit was acceptable . We then used SPSS software to perform a 3-step hierarchical regression analysis. The first model included control variables. We dichotomized gender, marital status, employment status, and self-identification as Chinese, with those who were male, married, employed full-time, and self-identified as Chinese being coded as "1," and the other categories coded as "0." In the second model, the following 3 key independent variables were added: experience of discrimination, worry about discrimination, and racism-related social media use. These variables were mean-centered. In the third model, the two interaction terms examining the moderating roles of experience of discrimination and worry about discrimination were added. No collinearity problems were identified after the mean-centering approach. The significance level was set at P<.05. Experience of discrimination was positively associated with depressive symptoms , supporting hypothesis 1. Racism-related social media use was also positively related to depression, supporting hypothesis 2. Worry about discrimination was not associated with depression . --- Results --- As shown in To answer RQ2 and RQ3, we found the significant interactive effect of social media use and worry about discrimination on depression . To visualize the moderation effect, we used Process version 3.5 to conduct simple slope analysis and produce the figure of the interaction. As depicted in Figure 1, among participants with low and --- Pan et al JOURNAL OF MEDICAL INTERNET RESEARCH --- XSL • FO RenderX medium levels of worry, social media use was positively and significantly related to depression . No significant relationship between social media use and depression was found at a high level of worry. In addition, female Asians were found to be more depressed than male Asians , and Chinese Asians were less depressed than those Asians who were not Chinese . --- RenderX --- Discussion --- Principal Findings The present study provides preliminary evidence that experience of discrimination during the COVID-19 pandemic is a risk factor for depressive symptoms among Asians in the United States. Meanwhile, racism-related social media use was also found to be negatively related to the well-being of US Asians, and the relationship between social media use and depression was moderated by worry about discrimination, such that social media use was associated with greater depression among those who were less worried about discrimination. Drawing on survey data from 209 Asians residing in the United States, the study presents the findings consistent with earlier research [20,21] showing that experience of racial discrimination induced by the COVID-19 pandemic was negatively related to the well-being among Asian people. Effective interventions should be designed to provide timely assistance to Asians who have experienced discrimination during the pandemic to prevent them from developing further depressive symptoms. One limitation of the current study is the use of an existing measurement of experienced racial discrimination, which may fail to capture the specific experiences of racial discrimination associated with the COVID-19 pandemic. Further research could focus on understanding the unique elements of racial discrimination in the COVID-19 context so that more accurate conclusions could be made. Using social media to read, post, and talk about racism was also found to be associated with higher depression. It is noteworthy that the relationship was significant when controlling for direct experience of discrimination . Given how fast-growing and visible anti-Asian sentiments have been on social media during the pandemic [29,30], and that Asians were more likely to use social media than other media sources to obtain COVID-19-related information [5,6], our finding deserves serious attention. It is also worth mentioning that our social media use scale includes a variety of social media activities through which individuals may be exposed to and engage with racism-related information. Relative to single-item questions asking about participants' social media use in one particular way, such as exposure to or consumption of a certain type of information [32,40], our scale has the strength of more comprehensively capturing multiple ways of social media use during the pandemic. Worry about discrimination was not directly associated with depression in the present study. When worry about discrimination was considered alongside the actual experience of discrimination, it was the actual experience that was detrimental. As shown in previous literature, the benefits and detriments of worry may have cancelled out each other, leading to a nonsignificant direct association [25][26][27][28]. It may be worthwhile for future research to explore possible moderators of this relationship, such as coping styles and social support-seeking behaviors, to better understand the implications of this type of worry for mental health. Although worry was not a significant independent variable, it was a significant moderator for the relationship between social media use and depression. Specifically, among Asians with low and medium levels of worry about discrimination, social media use was related to higher levels of depression. A possible explanation for our finding might be that Asians with low to medium worry were less prepared for anti-Asian discrimination. Thus, they felt more overwhelmed and depressed when exposed to greater amount of racism-related information on social media. Future research should explore in detail how US Asians with low and high worry cope with racial discrimination in different ways that may buffer or exacerbate the influence of social media use on depression. Meanwhile, it is also worthwhile to explore more factors that might moderate the relationship between social media use and depression, such as coping strategies, perceived social support, and so forth. In terms of demographic factors considered in our regression model, we found that female Asians were more depressed than male Asians, which is consistent with findings of previous studies [41,42]. Surprisingly, Chinese Asians were found to be less depressed than Asians who were not Chinese. Although Asians are normally being treated as one single ethnic group in the United States, research does indicate that there might be differences in the mental health mechanisms among various Asian ethnicities. For example, it was indicated that Chinese Americans had lower prevalence of depression than Korean and Vietnamese Americans [43]. Further study is needed to identify how the mental health conditions of different Asian groups have been impacted by the COVID-19 pandemic. --- Limitations and Conclusions The study has some limitations. The first is that the research model was not evaluated with a random sample. Therefore, readers are advised to take caution when generalizing the results to the overall Asian population in the United States or Asian groups in another country. Another limitation is that the cross-sectional study does not allow for drawing causal conclusions, and thus the findings should be interpreted as correlations rather than as having a cause-and-effect relationship. Despite all these limitations, the present study extends the current literature on rising anti-Asian discrimination and associated mental health outcomes in several ways. First, we differentiated the actual experience of discrimination and worry about discrimination and revealed their unique relationship with depression among US Asians in the context of the COVID-19 pandemic. Another theoretical contribution is providing important insights into the specific role of racism-related social media use in mental health among a minority group. Importantly, the results suggest that US Asians with higher versus lower levels of worry face different degrees of susceptibility to the negative influences of racism-related social media use on mental health. From a practical perspective, immediate and effective interventions should be implemented to decrease racist and discriminatory behaviors against US Asians, as direct experience of discrimination was found to be a robust risk factor for depression among this group, after controlling for various demographic variables. It is also critical to develop accessible --- Conflicts of Interest None declared. ©Shuya Pan, Chia-chen Yang, Jiun-Yi Tsai, Chenyu Dong. Originally published in the Journal of Medical Internet Research , 01.09.2021. This is an open-access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included. --- Abbreviations
The COVID-19 outbreak has spurred increasing anti-Asian racism and xenophobia in the United States, which might be detrimental to the psychological well-being of Asian people living in the United States.We studied three discrimination-related variables, including (1) experience of discrimination, (2) worry about discrimination, and (3) racism-related social media use during the COVID-19 pandemic among Asians in the United States. We examined how these three variables were related to depression, and how the association between racism-related social media use and depression was moderated by personal experience of and worry about racial discrimination. Methods: A web-based, cross-sectional survey was conducted. A total of 209 people (mean age 33.69, SD 11.31 years; 96/209, 45.93% female) who identified themselves as Asian and resided in the United States were included in the study. Results: Experience of discrimination (β=.33, P=.001) and racism-related social media use (β=.14, P=.045) were positively associated with depressive symptoms. Worry about discrimination (β=.13, P=.14) was not associated with depression. Worry about discrimination moderated the relationship between racism-related social media use and depression (β=-.25, P=.003) such that a positive relationship was observed among those who had low and medium levels of worry.The present study provided preliminary evidence that experience of discrimination during the COVID-19 pandemic was a risk factor of depressive symptoms among Asian people in the United States. Meanwhile, racism-related social media use was found to be negatively associated with the well-being of US Asians, and the relationship between social media use and depression was significantly moderated by worry about discrimination. It is critical to develop accessible programs to help US Asians cope with racial discrimination both in real lives and on social media during this unprecedented health crisis, especially among those who have not been mentally prepared for such challenges.
Introduction Assessment practices in higher education play a critical role in enhancing student learning experiences and outcomes . In the wake of the COVID-19 pandemic, higher education institutions in Zambia, like many worldwide, have faced unprecedented challenges in maintaining effective and meaningful assessment practices . The sudden shift to remote and online learning has necessitated adaptations in assessment methods , highlighting the need to critically examine the emerging issues and practices in Zambian higher education institutions. As institutions grapple with the complexities of transitioning to digital learning environments, understanding the implications for assessment practices becomes imperative , 2020). This study aims to explore the constructions of assessment in higher education, particularly in the aftermath of the COVID-19 disruptions, and to investigate how current assessment practices impact learning experiences and learner motivation. --- Background Assessment is an indispensable element of higher education and an integral part of the teaching and learning process . An institution of higher education is recognized by its assessment policies and practices that impact students' activities and achievements . However, there are various challenges encountered by faculties and students in conducting assessments in higher learning institutions . In many parts of the world, particularly in developing countries, a significant challenge facing education systems is the lack of adequate infrastructure to cope with the increasing number of students and conduct assessments . This is due to limited financial resources being allocated to the education sector for infrastructure development, resulting in overcrowded classrooms and inadequate facilities . Globally, standardized tests are widely used in education . These include mastery, objective, competence, certification, criterion, and classroom tests . As COVID-19 continued to threaten traditional classroom teaching, many countries turned to online learning as a viable alternative. Due to the pandemic, even the assessment of students was carried out remotely. However, studies have shown that during the COVID-19 pandemic, conducting e-SOTL in the South 7: December 2023 Masaiti assessments posed a major challenge due to the lack of computer proficiency among students and lecturers . Montenegro-Rueda et al. strengthen this argument by highlighting the challenges faced by faculty and students in transitioning to virtual environments. Faculty members often lack training in online assessment techniques, while students commonly face issues of academic dishonesty and misconduct . When these acts occur, they compromise the quality of higher learning institution assessments, negatively impacting graduates . Completing the academic year through non-face-to-face assessment poses a significant challenge . Several factors contribute to this challenge, including people's natural resistance to change and the technical limitations of computer systems designed for mainly face-to-face activities . Xu and Carless have highlighted that the COVID-19 pandemic has posed multiple challenges for the education sector. The pandemic has further worsened the existing inequalities in educational access and achievement due to the uneven distribution of educational infrastructure and resources . The lack of proper infrastructure and unpreparedness of both faculty and students have hindered large-scale experimentation in online education . Prior to the outbreak of COVID-19, assessments were typically conducted in a traditional classroom setting, with face-to-face interactions between teachers and students . This setting allows students to seek clarification on question styles, making assessments more inclusive for students without technological knowledge . Assessment practices in Zambian higher education have centred around quantifying student achievement through grades . This grading-centric approach often places undue emphasis on performance outcomes rather than fostering a deep understanding of the subject matter . This overemphasis on grades can hinder students' development of critical thinking skills, problem-solving abilities, and creativity . Additionally, the heavy reliance on grades may not fully capture the diverse range of students' learning experiences, abilities, and potential . In recent years, educational research and international initiatives have called for a re-evaluation of assessment practices, urging educators to move beyond mere quantification of learning outcomes . The focus has shifted towards more authentic and learner-centred approaches that foster critical thinking, creativity, and lifelong learning . However, the COVID-19 disruptions have brought these SOTL in the South 7: December 2023 Masaiti issues to the forefront, demanding immediate attention and critical examination of assessment practices in the context of remote and online learning. It is worth noting that the landscape of higher education in Zambia has undergone significant transformations over the years, with increasing enrolments and a growing emphasis on quality education. However, the COVID-19 pandemic disrupted the educational ecosystem, requiring rapid adaptations to ensure continuity of learning . In particular, assessment practices have faced unprecedented challenges as institutions have shifted from traditional face-to-face assessment methods to remote and online modes . Like many countries worldwide, Zambia implemented nationwide lockdowns and temporary educational institution closures to mitigate the virus's spread . These measures necessitated a swift transition to online and remote learning modalities. However, this sudden shift presented numerous challenges, including adapting assessment practices to the new learning environments. The disruption caused by the pandemic highlighted the significance of assessment as a critical component of the teaching and learning process, requiring careful considerations and adaptations to ensure its validity and reliability. Research on assessment practices in Zambian higher education is relatively limited, especially in the context of the COVID-19 pandemic and its impact on assessment experiences. Thus, there is a clear research gap that needs to be addressed. This study sought to bridge that gap by exploring the reflections of lecturers and students on their assessment experiences during and after the COVID-19 disruptions. By examining the perspectives of lecturers and students, the study aims to provide a comprehensive understanding of the challenges, opportunities, and implications of the recent assessment practices in Zambia's higher education sector. --- Research questions 1. How have the assessment experiences of lecturers and students been impacted by the academic disruptions caused by the COVID-19 pandemic in Zambia's largest higher education institution? 2. How do lecturers and students perceive the current assessment practices in higher education and their impact on learning experiences --- Theoretical framework The study was guided by the critical pedagogy theory, which emphasizes the need for education to be transformative, emancipatory, and empowering . According to critical pedagogy theory, education should be a tool for social justice, equity, and democracy. The theory posits that education should transmit knowledge, challenge dominant power structures, and promote critical thinking and action . This study applied critical pedagogy theory to the need for alternative approaches to assessment practices in higher education that prioritize flexibility and creativity. The theory emphasizes the importance of assessment practices that support learners' ongoing learning and development and promote student empowerment, equity, criticality, and lifelong learning . The study explored alternative pathways for inclusive and democratic assessments in Zambian higher education institutions, which aligned with the critical pedagogy theory's emphasis on social justice, equity, and democracy. It sought to give a voice to students and lecturers whose insights might play a critical role in transforming higher education assessments for student empowerment, equity, criticality, and lifelong learning. --- Literature review This section reviews the literature, highlighting the global perspective on the impact of COVID-19 on education and shedding light on formative and summative assessment in higher education. The section also delves into the effects of COVID-19 on the Zambian education system and demonstrates Zambia's responses. --- Global perspectives on the impact of COVID-19 on education Numerous studies have illustrated the transformative impact of COVID-19 on education systems worldwide. This global shift has prompted not only administrative reforms but also a substantial reimagining of the delivery of educational services within higher education institutions. Montenegro- As highlighted by Asahi, Unduragga, Valdέs & Wagner , the imposition of social distancing measures or school closures aimed at curbing the spread of the pandemic incurred significant social and economic costs. This upheaval particularly affected institutions heavily reliant on students' tuition fees as a primary source of income, underscoring the profound and widespread impact of COVID-19 on various facets of the education system, including the methodologies employed in assessments. --- Zambia's response to the impact of COVID-19 on higher education Zambia's strategic response plan to the challenges presented by the COVID-19 pandemic in the education sector, particularly in higher education, is anchored in the pillars of equity, efficiency, access, and equality outlined in the Education Sector and Skills Plan . The Ministry of Education is committed to allocating additional resources to expand access to primary, secondary, and higher education-a sector widely acknowledged for its role in combating poverty and hunger . , 2020). Despite these comprehensive efforts, the response from the higher education sector itself was not as clearly articulated. Unlike the well-defined measures implemented for early childhood education , primary, and secondary levels, higher education institutions were left to devise individual initiatives to ensure continuity in teaching and learning during the pandemic. During the peak of the COVID-19 pandemic, colleges and universities underwent a gradual shift to e-learning and later adopted a blended learning approach . The sudden move to distance and virtual learning posed significant challenges for higher education, where educators had limited time to adapt to new teaching modalities, manage virtual spaces, engage students innovatively, and address assessment issues using virtual platforms , 2020). As COVID-19 cases reduced, a shift to blended learning was introduced. Presently, all universities and colleges in Zambia are working diligently to enhance peer support, further integrate blended learning, and effectively navigate the educational landscape in the face of ongoing challenges posed by COVID-19. --- Formative and summative assessments in higher education institutions Assessment, a pivotal aspect of education, manifests through the dual lenses of formative and summative evaluations within higher education institutions. As elucidated by Montenegro-Rueda et al. , formative assessment assumes a dynamic role in the educational landscape. Its primary objective lies in continually monitoring a student's progress, offering valuable insights into their evolving understanding of the subject matter. This ongoing evaluation process is instrumental in identifying areas of strength and weakness, allowing educators to tailor their teaching approaches and interventions accordingly. In essence, formative assessments are not merely evaluative but serve as diagnostic tools, providing a comprehensive understanding of the learning journey . Constructive feedback, a hallmark of formative assessment, becomes a catalyst for improvement. It fosters a symbiotic relationship between educators and students, nurturing a collaborative atmosphere conducive to academic growth . The iterative nature of formative assessment aligns with the educational philosophy that perceives learning as an evolving and SOTL in the South 7: December 2023 Masaiti adaptive process . On the other hand, summative assessment, a distinct yet complementary counterpart, operates as a conclusive evaluation method . Its focal point shifts towards appraising a student's overall performance at the culmination of a course or academic period. The summative assessment process involves assigning grades or scores and facilitating a quantitative comparison of a student's achievements with peers or predefined criteria . These summative evaluations, often conducted at the conclusion of a course, contribute significantly to the determination of academic qualifications. Together, formative and summative assessments in higher education institutions constitute a symbiotic relationship . Formative assessments lay the groundwork for continuous improvement and personalized learning experiences , while summative assessments encapsulate the culmination of academic endeavours, providing a tangible measure of educational attainment . This dual evaluative framework captures the intricate aspects of assessment in higher education, addressing the varied requirements of both learners and educational institutions. --- Methodology This study employed a qualitative research design to investigate the emerging issues and assessment practices in Zambian higher education institutions during and after the COVID-19 disruptions. Qualitative research was particularly suitable for exploring the perspectives, experiences, and insights of lecturers and students in a comprehensive and nuanced manner. Through in-depth interviews, this study aimed to capture the rich and contextualized data necessary to understand the complexities of assessment practices and their impact on teaching and learning. --- Research design This research adopted a qualitative research paradigm with a specific emphasis on the case study design. The decision to employ a qualitative approach was grounded in the works of Creswell and Stake , who advocate for qualitative research as a suitable strategy for exploring complex phenomena and understanding the experiences and perspectives of participants. Qualitative research allowed for an in-depth and contextualized examination, aligning with the intricacies of assessing the impact of COVID-19 on teaching and learning practices in higher education. The justification for selecting a case study design was rooted in the writings of Stake , Creswell and Yin ), among others, which highlight its suitability for exploring a specific SOTL in the South 7: December 2023 Masaiti bounded system in detail. The study focused on one large university in Zambia, aligning with the principles of case study research outlined by Stake ) and Creswell ). According to Stake , a case study design is particularly valuable for gaining an in-depth understanding of a phenomenon within its natural context. This approach allowed for a detailed exploration of the complexities inherent in the assessment practices of the selected university in the context of COVID-19 disruptions. Additionally, the decision to focus on one large university is consistent with the recommendations of Creswell ) and Yin , who emphasize the importance of selecting a case that provides rich information for the research questions. A focused case study allows for an in-depth examination of a particular phenomenon, ensuring a thorough analysis that goes beyond the surface-level observations possible in broader research designs , contributing to a nuanced understanding of assessment practices in the post-COVID-19 educational landscape. --- --- Data collection The data collection process for this study involved a combination of in-depth semi-structured interviews with lecturers and focus groups with students. These methods were chosen to facilitate a comprehensive exploration of the participants' experiences and perspectives regarding the impact of COVID-19 disruptions on assessment practices in higher education. For lecturers, in-depth semi-structured interviews were conducted. This method allowed for openended discussions, enabling participants to express their experiences and insights in their own words. The semi-structured nature provided flexibility while ensuring that key themes related to COVID-19 disruptions and assessment practices were systematically explored. Students participated in focus groups, creating a dynamic setting for collective discussions. This method encouraged participants to share and reflect on their experiences within the group context, capturing a range of perspectives and fostering interactive dialogue. Both in-person and virtual interviews were utilized for the data collection process. In-person interviews allowed for a more personal and immediate connection with participants. Simultaneously, virtual interviews, conducted through Google Meet video conferencing, provided a flexible option for engaging with the study's remote participants. All interviews with lecturers and focus groups with students were audio-recorded with explicit participant consent. Five focus groups, each comprising 10 students, were conducted in total. Audio recording served as a crucial tool in preserving the richness and depth of participants' responses, ensuring that no nuances were lost during subsequent analysis. Verbatim transcription of the audio recordings was carried out. This detailed transcription process aimed to capture not only the spoken words but also the tone, emphasis, and context of the participants' expressions. Verbatim transcription provided a robust foundation for subsequent qualitative analysis. --- Interview and focus group content For both students and lecturers, the questions and discussion points were developed based on the research questions, aiming to explore experiences, perceptions, and reflections on assessment ISSN 2523-1154 SOTL in the South 7: December 2023 Masaiti findings and provide feedback, thus enhancing the credibility and trustworthiness of the data. Secondly, triangulation was employed by collecting data from multiple sources and using multiple data collection methods . This enhanced the comprehensiveness and depth of the findings. Ethical considerations were paramount throughout the research process. Informed consent was obtained from all participants, ensuring that they were fully aware of the study's purpose, procedures, and rights to withdraw at any time. Participants' confidentiality and anonymity were maintained through pseudonyms and secure data storage. Institutional ethical clearance was obtained before data collection to ensure compliance with ethical guidelines and protocols. --- Findings and results In the following sections, the paper presents findings regarding the impact of the COVID-19 pandemic on assessment experiences in Zambian higher education institutions. Shaped by the lens of critical social theory, these findings reveal the multifaceted challenges and opportunities encountered by both lecturers and students. The paper begins with an examination of the systemic inequities laid bare by the pandemic, where disparities in internet connectivity and digital access have significantly influenced online assessments. It further navigates through the perceptions of lecturers and students regarding the prevailing emphasis on grades, revealing the tensions between traditional assessment practices and the collective desire for authentic learning experiences. Culminating in the discussion is the articulation of a collective vision by lecturers and students-an envisioning of alternative approaches that promote flexibility, creativity, and the empowerment of learners. --- Assessment experiences of lecturers and students during the COVID-19 pandemic The COVID-19 pandemic has significantly disrupted higher education in Zambia, leading to substantial changes in assessment experiences for lecturers and students. With the sudden shift to remote and online learning, traditional assessment methods such as in-person exams and assignments had to be adapted or replaced. Lecturers and students faced challenges adjusting to these new assessment formats, including technical difficulties, limited access to reliable internet connectivity and devices, and unfamiliarity with online assessment platforms. ISSN 2523-1154 SOTL in the South 7: December 2023 Masaiti For lecturers, the transition to online assessments required them to re-evaluate and redesign their assessment strategies to ensure they were still valid, reliable, and aligned with the learning outcomes. They had to explore alternative methods such as online quizzes, essays, and projectbased assessments. Additionally, they had to find ways to provide timely feedback to students remotely, which was crucial for their learning and growth. One lecturer had this to say: Moving to online assessments prompted us to reassess our strategies. We had to find ways of ensuring that the integrity and reliability of assessments remained intact while adapting to the virtual format. It involved resorting to alternative methods, such as online quizzes, while navigating the challenge of providing timely and constructive feedback. [Lecturer 9, Individual Interview] On the other hand, students faced various challenges in engaging with online assessments. They had to adapt to new learning environments, manage their time effectively, and navigate the technical requirements of online assessments. Some students faced difficulties in accessing necessary resources and struggled with self-directed learning. The absence of face-to-face interaction with lecturers and peers also impacted their motivation and sense of belonging in the academic community. During the focus group discussion, students revealed that: Adjusting to online assessments presented several challenges. We had to get used to different online learning platforms, manage our time efficiently, and figure out the technical aspects of online assessments, especially timed quizzes. Accessing essential resources became a huge challenge for most of us, and the lack of direct interaction with lecturers and coursemates worsened our motivation. [Student, FGD] The assessment experiences of lecturers and students in Zambian higher education institutions have been profoundly affected by the academic disruptions caused by the COVID-19 pandemic. The sudden shift from traditional face-to-face instruction to remote learning brought about significant changes in the assessment landscape and required educators and students to adapt to new modes of evaluation. One of the immediate impacts of the pandemic was the technological divide among students. Many students faced challenges accessing reliable internet connectivity and lacked the necessary devices to participate effectively in online assessments. This digital divide created inequalities in students' ability to fully engage in the assessment process and demonstrate their knowledge and skills. Furthermore, students already marginalized or economically disadvantaged faced even more significant barriers in accessing online assessments, exacerbating existing disparities in educational opportunities. SOTL in the South 7: December 2023 Masaiti During COVID-19 period, there was no equity at all in the way we were assessing students because some students had challenges with internet connectivity. You would find that you set an online quiz, but half the class is not able to take it for various reasons, such as lack of electricity, mobile connectivity, and internet bundles. Some of them did not even have a smartphone, let alone a laptop! [Lecturer 1, Individual Interview] The transition to remote assessments necessitated adjustments in the nature and format of assessment tasks. Traditional assessment methods, such as in-person exams or practical assessments, had to be replaced with alternative approaches that could be conducted online, such as timed assessments, online quizzes, or take-home assignments. Lecturers had to redesign their assessments to ensure that they remained valid, reliable, and aligned with the learning outcomes of their courses in the new remote learning environment. This shift required lecturers and students to adapt to new assessment formats and develop the necessary skills to navigate online platforms and technologies. The transition to online learning necessitated a significant overhaul of our assessment methods. Traditional approaches like in-person exams and practical assessments became impractical in the online setting. We had to explore alternative methods that could be conducted effectively online. [Lecturer 4, Individual Interview] When asked about how the shift to alternative assessments impacted the design of assessments to ensure they remained effective, the lecturers explained that they revisited the learning outcomes of their courses to ensure that assessments still accurately measured what students were expected to achieve. They adjusted the format of questions to suit online delivery, paying attention to factors such as question clarity and fairness. Ensuring the reliability of assessments was vital, so we focused on consistency and fairness in grading across different online platforms. The challenge was to adapt these assessments to the online environment without compromising their integrity. It required careful consideration of how to assess students' knowledge and skills in a virtual setting. [Lecturer 2, Individual Interview] Furthermore, the social and emotional aspects of assessment experiences were significantly impacted by the disruptions caused by the pandemic. The loss of face-to-face interaction and the transition to virtual classrooms limited opportunities for collaborative learning, immediate feedback, and personal interaction with lecturers and peers during the assessment process. The absence of these crucial elements may have resulted in decreased motivation, engagement, and a sense of belonging for students, potentially affecting their overall assessment experiences and academic performance. SOTL in the South 7: December 2023 Masaiti The transition to online learning indeed posed challenges to collaborative learning. The loss of face-to-face interactions reduced opportunities for students to engage in group discussions, peer collaboration, and joint problem-solving. Collaborative aspects that were once integral to the assessment process became more challenging to facilitate in the virtual setting. The diminished collaborative and interactive nature definitely compromised the sense of belonging, thereby leading to decreased motivation and engagement and negatively impacting our students' overall assessment experiences and academic performance. [Lecturer 1, Individual Interview] The health concerns, economic hardships, and changes in living situations resulting from the pandemic further created additional stressors for students, impacting their ability to concentrate on assessments and perform at their full potential. The emotional toll of the pandemic on students' well-being had repercussions on their overall engagement, resilience, and academic outcomes. "A lot of us could not focus. Psychologically, we were defeated. Having to learn from home, with all those house chores and the disturbances at home, just made the whole arrangement stressful." [Student, FGD] --- Participants' perceptions of the current assessment practices in higher education Lecturers and students held varying perceptions regarding the prevailing assessment practices, particularly the emphasis on grades. While some lecturers and students recognized the importance of grades as a measure of academic achievement and a means of evaluating student performance, others expressed concerns about their limitations and impact on authentic learning experiences. Many lecturers acknowledged that focusing on grades, especially in a high-stakes assessment environment, could lead to a narrow emphasis on rote memorization and the regurgitation of information rather than fostering deep understanding and critical thinking. This perception was reinforced by the prevalent use of traditional assessment methods, such as objective quizzes and tests, that often prioritized recall of factual knowledge rather than higher-order thinking skills. Some of us see grades as a valid measure of academic success and a way to evaluate how well a student is performing, but there's a growing concern within the university that this emphasis on grades, especially in high-stakes assessments, tends to narrow our focus to memorization and regurgitation rather than promoting deep understanding and critical thinking. [Lecturer 3, Individual Interview] The overemphasis on grades created a culture of competition among students, where the primary goal became achieving high marks rather than a genuine passion for learning and personal growth. ISSN 2523-1154 SOTL in the South 7: December 2023 Masaiti Some of us feel that the emphasis on grades has led to a culture of competition among students, where the main goal is to get high marks rather than genuinely enjoying the learning process and personal growth. [Student, FGD] This perception was further exacerbated by the grading practices that predominantly focused on performance outcomes rather than the learning process. Students felt pressured to conform to the expectations of the grading system, which sometimes hindered their creativity, exploration, and intellectual curiosity. Furthermore, the focus on grades hindered the development of critical thinking and problem-solving skills, as it often reduced complex concepts and real-world challenges into simplistic quantifiable measures. This perception was particularly relevant in disciplines that required higher-level cognitive abilities, such as analysis, synthesis, and evaluation. Lecturers and students desired assessment practices to better capture their ability to think critically, apply knowledge in real-life contexts, and demonstrate their overall understanding of the subject matter. I think many of us students are really seeking assessment methods that go beyond just assigning grades. We want something that truly reflects our ability to think critically, apply what we've learned in real-life situations, and show a deep understanding of the subject matter. --- [Student FGD] From the perspective of lecturers, there's a shared desire for assessment practices that extend beyond the traditional grading system. Right now, there is a curriculum review going on in our school. We are looking for methods that can authentically capture the students' capacity to think critically, apply theoretical knowledge in practical contexts, and demonstrate a profound understanding of the material. [Lecturer 8,Individual Interview] In terms of learner motivation, the heavy reliance on grades was viewed by some lecturers and students as an extrinsic motivator that overshadowed intrinsic motivation and the joy of learning. The pressure to achieve high grades for academic success and future opportunities often led to a focus on performance-driven goals rather than a genuine passion for knowledge acquisition and personal development. This perception highlighted the potentially detrimental effects on intrinsic motivation, autonomy, and student engagement of overemphasizing grades. In terms of motivating learners, there's a concern that the heavy reliance on grades may act more as an external motivator at the expense of the intrinsic joy of learning. The pressure to outperform peers can sometimes shift the focus towards performance-driven goals. [Lecturer 10,Individual Interview] For some of us students, the constant emphasis on grades seems more like an external push rather than something that comes from a genuine interest in learning. [Student, FGD) ISSN 2523-1154 SOTL in the South 7: December 2023 Masaiti However, the participants, especially students, acknowledged a positive development resulting from COVID-19 disruptions -the introduction of supplementary exams across all schools, allowing students who failed exams to resit their failed courses without the need to repeat the entire year. Before the pandemic, only a few schools had such a practice. Therefore, a lot of students were made to repeat courses, and some were even placed on part-time status to repeat an entire academic year if they failed their courses. Adopting supplementary exams in all schools gave students a second chance and ensured a smooth academic progression. Students widely acknowledged and welcomed this change as it promoted fairness, reduced academic setbacks, and facilitated their educational journey. A student had this to say: …[In the past] if we failed our exams, we would have to repeat the entire course or, in some cases, the whole year. It was demoralizing and often resulted in delays in graduation. However, we now have a chance to resit our failed courses without the fear of being referred to part-time and hence losing one's scholarship. This has really brought us hope. It promotes fairness and relieves the pressure and anxiety associated with failing a course. [Student, FGD] For some lecturers, however, this was an extra task they were not ready to continue executing, as can be seen from this response below: I hope this is the last time we are asked to prepare supplementary exams. We are tired! We need to reset and revert to the normal. When they introduced them, they told us we had to do this for our students who failed exams mainly due to online learning challenges during the pandemic. Three years later, we are still talking about sups! Honestly, it is too much for us. We already prepare the normal exams, deferred exams, distance exams, and now supplementary exams! [Lecturer 5,Individual Interview] All in all, the perceptions of lecturers and students regarding the current assessment practices in higher education, specifically the focus on grades, were diverse. While some recognized the significance of grades as an evaluation tool, others expressed concerns about their impact on authentic learning experiences and learner motivation. The desire for assessment practices that promote critical thinking, creativity, and intrinsic motivation highlights the need for a broader and more holistic approach to assessment in higher education. Moving beyond a singular focus on grades and exploring alternative methods that assess the learning process, foster intrinsic motivation, and promote deep understanding can contribute to a more authentic and engaging learning environment for both lecturers and students. ISSN 2523ISSN -1154 SOTL in the South 7: December 2023 Masaiti --- Envisioned alternative approaches to higher education assessment When asked about alternative approaches to higher education assessment, lecturers and students in the two universities envisioned a number of alternative approaches that prioritized flexibility and creativity and promoted student empowerment, equity, critical thinking, and lifelong learning. These alternative approaches should address traditional assessment practices' limitations and create a more inclusive and meaningful learning environment. The following answers provide a detailed exploration of these envisioned alternatives: Project-Based Assessments: Lecturers and students recognized the value of project-based assessments, where students could engage in real-world tasks and apply their knowledge and skills to solve authentic problems. This approach could provide opportunities for creativity, critical thinking, and the development of practical skills relevant to students' future careers. Students could showcase their abilities holistically and contextually by working on projects individually or collaboratively. I kind of like the idea of project-based assessments. It goes beyond just chasing grades; it's about applying what we have learned to real-world tasks. Working on projects individually or with others could add a practical and collaborative aspect to our learning, allowing us to showcase our abilities in a more meaningful way. [Student, FGD] Project-based assessments offer a valuable shift from traditional methods, providing students with opportunities to engage in real-world projects and apply their knowledge to solve real problems. It's about fostering skills that are essential for their future careers. [Lecturer 3, Individual Interview] Performance Assessments: The idea of performance assessments, such as presentations, debates, and simulations, was also proposed by lecturers and students. These assessments provide a platform for students to demonstrate their understanding, communication skills, and ability to think critically in real-time situations. Several lecturers who had used performance assessments noted that these assessments encouraged active engagement, creativity, and personalized expression of knowledge and ideas. Peer and Self-Assessment: Lecturers and students embraced the concept of peer and selfassessment to foster student empowerment and enhance critical thinking skills. This approach involved students evaluating their work and providing feedback to their peers based on established criteria or rubrics. Peer and self-assessment were reported to encourage active engagement, collaboration, and the development of evaluative judgment while promoting a sense of ownership and responsibility for learning outcomes. For example, one senior lecturer observed that from his over 20 years of experience, "Students take ownership and feel a sense of responsibility for their learning outcomes when they know they will be assessed by their peers, creating a more enriched and participatory learning environment." [Lecturer 6, Individual Interview) Authentic and Context-Based Assessments: Lecturers and students emphasized the importance of assessments that mirrored real-life situations and challenges. Students could apply their knowledge and skills meaningfully by designing contextually relevant assessments aligned with professional practice. Authentic assessments, such as case studies, simulations, or fieldwork, were believed to provide opportunities for critical thinking, problem-solving, and decision-making within specific disciplinary or professional contexts. Absolutely! Authentic assessments are key in preparing students for the demands of the 21 st century. While cognitive skills are important, the ability to communicate, collaborate, and solve real-world problems is equally, if not more, crucial. Authentic assessments provide a platform to evaluate these skills, giving us a better understanding of a student's preparedness for the challenges they'll face in their future careers. [Lecturer 4,Individual Interview] For students too, "traditional assessments often miss out on these vital aspects [skills such as communication, collaboration, and problem-solving], and authentic assessments provide a more holistic view of our abilities." [Student, FGD] Flexible Assessment Formats: Students recognized the need for flexibility in assessment formats to accommodate different learning styles and preferences. This involved offering a range of assessment options, such as written essays, oral presentations, or practical demonstrations. They particularly believed that flexible assessment formats allowed them to showcase their strengths and talents, promoting inclusivity and recognizing diverse forms of intelligence. In addition, they bemoaned the rigidity of current assessment practices, where they are not allowed to redo or resubmit assignments, especially in cases of poor performance on the initially submitted tasks. …. This kind of flexibility promotes inclusivity and recognizes that intelligence comes in many forms. It is frustrating when assessment practices are rigid and don't allow us a chance to redo or resubmit assignments, especially if we didn't do well the first time. It feels like we are not given the opportunity to learn and improve from our mistakes. [Student, FGD] All in all, lecturers and students in Zambian higher education institutions envisioned alternative approaches to assessment that prioritized flexibility and creativity and promoted student empowerment, equity, critical thinking, and lifelong learning. These approaches included projectbased assessments, performance assessments, portfolios and reflective journals, peer and selfassessment, authentic and contextualized assessments, and flexible assessment formats. By embracing these alternatives, higher education institutions can create a more dynamic and inclusive assessment environment that encourages active learning, fosters creativity, and prepares students for lifelong success. --- Discussion The assessment experiences of lecturers and students in Zambian higher education institutions have been significantly impacted by the academic disruptions caused by the COVID-19 pandemic. The sudden shift to remote learning and the adoption of online assessment methods have posed various challenges and opportunities for both lecturers and students. Drawing upon critical social theory, which examines the impact of social structures and power dynamics on education , this discussion explores how lecturers and students perceive the current assessment practices in higher education and envisions alternative approaches that prioritize flexibility, creativity, and promote student empowerment, equity, critical thinking, and lifelong learning. The findings indicate that the COVID-19 pandemic significantly impacted the assessment experiences of lecturers and students in Zambian higher education institutions. The disruptions exposed existing inequities, raised concerns about the authenticity and validity of online assessments, and highlighted the importance of social interaction and holistic approaches to assessment. The pandemic-induced academic disruptions brought to the forefront the existing inequalities within the Zambian higher education system. Access to reliable internet connectivity, digital devices, and conducive learning environments varies among students , resulting in differential experiences and outcomes in online assessments . This study highlights the systemic disparities within the Zambian higher education context. The digital divide exposed during the pandemic becomes a manifestation of broader socioeconomic inequities, aligning with critical pedagogy's emphasis on challenging dominant power structures and promoting SOTL in the South 7: December 2023 Masaiti social justice through the adoption of educational practices that are truly inclusive and equitable . Both lecturers and students perceive the focus on grades in current assessment practices as potentially undermining authentic learning experiences and learner motivation. The overemphasis on grades can create a culture of competitiveness and compliance, where students are primarily driven by the pursuit of high grades rather than a genuine passion for learning . This aligns with critical social theory's critique of education systems reproducing social inequalities and reinforcing hegemonic power structures . The overemphasis on grades mirrors the reproduction of power structures criticized by critical pedagogy theorists such as Giroux . These findings emphasize the need to shift the focus from grades to a more holistic approach that values the learning process, encourages critical thinking, and promotes student empowerment . Lecturers and students envision alternative approaches to higher education assessment that prioritize flexibility and creativity and promote student empowerment, equity, critical thinking, and lifelong learning. One possible alternative approach is the adoption of authentic assessments that mirror real-world contexts and challenges . Authentic assessments require students to apply their knowledge and skills in practical situations, promoting critical thinking, creativity, and the development of transferable skills . By engaging in authentic assessments, students become active participants in their learning, connecting theory to practice and developing a deeper understanding of the subject matter. This approach reflects the core principles of critical pedagogy in promoting a deeper, more meaningful understanding of the learning process. Furthermore, lecturers and students envision the importance of adopting alternative assessment methods that go beyond traditional exams and focus on competency-based assessments. This approach aligns with critical social theory's emphasis on addressing social inequities and empowering students with diverse talents and abilities . Competency-based assessments shift the focus from memorization to demonstrating specific skills and abilities relevant to students' discipline or profession . By emphasizing competencies, students are empowered to take ownership of their learning, engage in meaningful tasks, and develop transferable skills in real-world contexts. ISSN 2523-1154 SOTL in the South 7: December 2023 Masaiti In addition, the findings suggest that lecturers and students value flexible assessment formats that accommodate diverse learning styles and preferences. Flexible assessment formats give students choices in assessment tasks and allow them to demonstrate their knowledge and skills through different mediums, such as written assignments, oral presentations, multimedia projects, or practical demonstrations. This approach acknowledges the individuality of learners and promotes creativity, engagement, and personalization of learning experiences . Moreover, lecturers and students recognize the importance of assessment practices that promote critical thinking and reflection. Critical social theory emphasizes the development of critical consciousness and transformative learning . By incorporating self-assessment and reflection, students are encouraged to critically examine their learning processes, assumptions, and biases . This approach promotes metacognition, self-directed learning, and the development of critical thinking skills . By incorporating these alternative approaches to higher education assessment, Zambian institutions can foster a more inclusive, engaging, and transformative learning environment that promotes social justice and empowers students to become critical and active participants in their education. These alternative approaches align with critical social theory's call for transformative change in education by challenging the traditional power dynamics, promoting student empowerment, and fostering critical consciousness . Furthermore, adopting these alternative approaches to assessment can contribute to developing lifelong learners who possess the necessary skills and competencies for success in a rapidly changing world. By prioritizing flexibility, creativity, and critical thinking, students are better equipped to adapt to new challenges, think critically about complex issues, and continue their learning journey beyond the boundaries of formal education . However, it is essential to acknowledge that implementing these alternative approaches may encounter various challenges. For instance, incorporating authentic assessments and flexible formats requires careful planning, resources, and support from higher education institutions . The shift from a grade-focused system to one that prioritizes holistic development and competencies may require a paradigm shift in the mindset of lecturers, students, and other stakeholders . Overcoming these ISSN 2523-1154 SOTL in the South 7: December 2023 Masaiti challenges will require collaborative efforts and a commitment to transformative change at all levels of the education system. The findings of this study indicate that lecturers and students in Zambia envision alternative approaches to higher education assessment that prioritize flexibility, creativity, student empowerment, equity, critical thinking, and lifelong learning. These alternative approaches, inspired by critical social theory, challenge the dominant assessment practices, and hold the potential to transform the educational landscape. By adopting authentic assessments, flexible formats, and a competency-based approach, higher education institutions in Zambia can create a more inclusive, empowering, and socially just assessment environment where students actively participate in their education and develop the skills and competencies needed for success in the 21st century. --- Conclusion and future research directions The assessment experiences of lecturers and students in Zambian higher education institutions were significantly impacted by the academic disruptions caused by the COVID-19 pandemic. The sudden shift to online learning and remote assessment modalities presented various challenges and changes in the assessment landscape. Lecturers and students faced difficulties in adapting to the online assessment formats and technological limitations. The transition to virtual assessments required adjustments in assessment design, delivery, and feedback mechanisms. Some lecturers and students encountered challenges in accessing reliable internet connectivity, appropriate devices, and necessary software, which affected their ability to participate fully in assessments. The COVID-19 pandemic also raised concerns about the integrity and fairness of online assessments. Both lecturers and students were apprehensive about potential cheating and academic dishonesty issues in remote assessment settings. The absence of direct supervision and invigilation created new challenges in ensuring the authenticity and reliability of assessment outcomes. Regarding the perceptions of current assessment practices in higher education, both lecturers and students expressed mixed opinions about the focus on grades and their impact on authentic learning experiences and learner motivation. While some acknowledged the importance of grades as a measure of achievement and a motivational factor, others criticized the overreliance on grades as a narrow indicator of student abilities. Lecturers and students perceived that the emphasis on grades could lead to a superficial focus on memorization and regurgitation of information rather than fostering deep learning and critical thinking. They highlighted the need for assessment practices that SOTL in the South 7: December 2023 Masaiti encouraged holistic development, creativity, and the application of knowledge in real-world contexts. In envisioning alternative approaches to higher education assessment, lecturers and students emphasized the importance of flexibility and creativity and promoting student empowerment, equity, critical thinking, and lifelong learning. Some alternative approaches they envisioned included project-based assessments, performance assessments, peer and self-assessments, authentic and contextualized assessments, and flexible assessment formats. These alternative approaches can provide more meaningful and authentic assessment experiences that align with students' diverse needs and learning styles. They emphasized the importance of assessing not only the outcomes but also the process of learning, encouraging students' active engagement, critical thinking, and problem-solving skills. In general, the findings of this study suggest that the COVID-19 pandemic has significantly impacted the assessment experiences of lecturers and students in Zambian higher education institutions. It has highlighted the need to re-imagine traditional assessment practices and explore alternative approaches prioritizing flexibility, creativity, and student empowerment. The study concludes that a shift toward more authentic and learner-centred assessment practices can enhance the quality of higher education and promote lifelong learning. Institutions can create a more inclusive, engaging, and equitable assessment environment by considering the perspectives of lecturers and students and incorporating their insights into assessment redesign. Based on these findings, future research directions could include exploring the implementation and effectiveness of alternative assessment approaches in real-world educational contexts. Additionally, investigating the impact of technology-supported assessments, innovative feedback strategies, and inclusive assessment practices on student engagement and learning outcomes would be valuable. Also, investigating the professional development needs of lecturers in adopting and implementing alternative assessment strategies can enhance their pedagogical practices. Furthermore, future research should also consider the long-term effects of the COVID-19 pandemic on assessment practices and explore strategies to enhance assessment resilience and adaptability in times of crisis. Finally, the study explores assessment experiences during and after the COVID-19 disruptions. However, the rapid evolution of post-pandemic educational landscapes might introduce new dynamics that were not fully captured in the study . Despite these acknowledged limitations, the study has yielded significant findings that shed light on the experiences of lecturers and students, particularly in the context of assessment practices during and after the COVID-19 pandemic. --- the challenges faced, adaptations made, the impact on teaching and learning, perceptions of current assessment practices, and suggestions for improvement. Probing questions were strategically employed to delve deeper into participants' responses, ensuring a comprehensive understanding of their experiences and perspectives. --- Focus group discussion guide The researchers used the following schedule for each focus group with students: Some people say student grading and assessment in general causes panic, stress, and anxiety and should be reformed to enhance students' learning experiences. What do you think? Should there be a focus on fairness, inclusivity, and democracy in assessments? How? Is the focus on exams and grades a problem? Does it take away from other things? Are there other ways you wish assessments were conducted? Is there anything else you want to talk about? --- Semi-structured interview guide The following schedule was used during interviews with individual lecturers: Some people say student grading and assessment in general causes panic, stress, and anxiety and should be reformed to enhance students' learning experiences. What do you think? Should there be a focus on fairness, inclusivity, and democracy in assessments? How? Is the focus on exams and grades a problem? Does it take away from other things? Are there other ways you wish assessments were conducted? Is there anything else you want to talk about? --- Data analysis, credibility, and ethics Thematic analysis was employed to analyze the qualitative data obtained from the interviews. Thematic analysis involves systematically identifying, coding, and analyzing patterns and themes within the data . The data were transcribed and read multiple times to gain familiarity and develop an initial coding framework. Coding, in this case, involved identifying meaningful data units and assigning descriptive codes to them. These codes were refined and organized into preliminary themes. The themes were reviewed and refined through an iterative process, ensuring that they accurately captured the key issues and insights related to assessment practices in Zambian higher education. The final themes were further examined and supported by relevant interview quotes, providing a rich and detailed account of participants' perspectives. Several strategies were employed to ensure the validity and reliability of the findings. Firstly, member checking was conducted, where participants were allowed to review the preliminary --- Limitations The study acknowledges several limitations that may influence the interpretation and generalizability of its findings. First, the sample size, comprising 20 lecturers and 50 students from one public university in Zambia, might not fully represent the diversity of experiences within the country's higher education institutions . This limitation could impact the broader applicability of the study's results, as specific institutional contexts may vary. Additionally, the contextual specificity of the research, conducted solely within Zambia, raises concerns about the transferability of the findings to different socio-cultural or educational settings . The unique characteristics of the Zambian higher education system might limit the extent to which the study's conclusions can be extrapolated to an international context. The reliance on subjective reflections and perceptions of lecturers and students constitutes another limitation . Participants' interpretations of their assessment experiences and preferences for alternative approaches may be influenced by individual perspectives, introducing potential bias into the study. The study also faced constraints related to the timeframe of data collection, particularly in the aftermath of the COVID-19 disruptions. A more extended study period could have facilitated a more comprehensive exploration of the evolving dynamics in assessment practices. Despite efforts to maintain objectivity, the potential for researcher bias remains a concern. The researcher's background and perspectives could inadvertently influence the interpretation of data, and although reflexivity was employed to mitigate this bias, it remains a potential limitation . The reliance on a single-method approach, primarily in-depth interviews, is another limitation . While this method provided rich qualitative data, incorporating a broader methodological toolkit, such as surveys or observations, might have offered a more comprehensive understanding of assessment practices. Furthermore, the study primarily focused on the voices of lecturers and students, neglecting perspectives from other stakeholders such as administrators or policymakers . Including these perspectives in future research could provide additional dimensions to the understanding of assessment practices in higher education.
This paper interrogates emerging issues and assessment practices within higher education institutions in Zambia. It presents the reflections of a sample of lecturers and students from the country's largest public university on their assessment experiences during and after the COVID-19 pandemic disruptions. Employing a qualitative research framework grounded in critical social theory, the study uncovers the constructions of assessment in higher education and how current assessment practices, particularly the focus on grades, undermine authentic learning experiences and learner motivation. Through in-depth interviews, participants challenge current practices and envision alternative approaches to higher education assessment that prioritize flexibility and creativity. This article gives a voice to the otherwise voiceless students and lecturers whose insights might be critical in transforming higher education assessments for student empowerment, equity, criticality, and lifelong learning.
Introduction Gender-based violence in adolescence is a phenomenon that affects young people worldwide, and its prevalence is even greater than in adult couples [1,2]. The heterogeneity of this phenomenon, and the number of variables involved at its onset and in its maintenance, have complicated its approach from both the point of view of prevention and that of detection and intervention. The difficulty is compounded considering that the victim-survivors themselves are often unaware of the situation of victimisation, so that they are unlikely to seek help. For example, Spanish government data reveal that one in three females do not identify behaviours such as control as being abusive [3]. Similarly, various abusive behaviours that would not be accepted under normal circumstances are tolerated and naturalised under the prism of romantic love [4]. In this regard, according to the National Institute of Statistics of Spain the total number of survivor-victims of gender-based violence is greater than the number of people reported, with a ratio of 1.6 survivor-victims for each person reported [5]. Considering this phenomenon, health professionals have an essential role to play in the care of victims of gender-based violence. Doctors and nurses are at the frontline of psychological care within the public health system. They play a fundamental part in both the screening and referral of adolescent victim-survivors for their intervention process, as well as for the guidance and help to those victim-survivors' families [6]. In this sense, various research studies have pointed out the strengths and weaknesses observed in Spain's public health system with respect to the psychological care provided to victims of gender-based violence, as well as the needs detected [7,8]. The role of psychologists, as experts in mental and emotional health, is equally fundamental. Victim-survivors of adolescent dating violence tend to experience a large number of internalising-type psychological symptoms , as well as a lack of adequate resources and coping skills to overcome such situations [9]. Similarly, these victim-survivors exhibit a large number of externalising symptoms. Specifically, the presence in the victims of risky behaviours such as the consumption of substances such as alcohol and marijuana has been highlighted [10,11], and this is ultimately predictive of the phenomenon of polyvictimisation [12,13]. Likewise, the consumption of alcohol or drugs seems on occasion to become a maladaptive resource to cope with the situation experienced [14,15], further aggravating the situation. Taking into account the above considerations, it is absolutely essential for a victimsurvivor to receive psychological treatment, not only to face the psychological consequences deriving from victimisation, but also to strengthen their personal and emotional skills to be able to prevent it in the future. Despite this, there have been few studies that have analysed the role of psychologists and the specialised centres where they carry out their professional work, which, more than primary care, would attend and care for adolescent victim-survivors of gender-based violence who have been referred from other health services. Within the Spanish public health system, the mental health services are responsible for attending to any patient suffering from psychological and/or emotional problems. However, these centres do not have such a high operating efficiency as primary care centres, mainly due to the waiting lists that cause consultations to be delayed. In this sense, there has been a warning that in cities such as Madrid, the waiting lists for psychological care for minors entail a delay of up to five months [16]. Taking into account the above context, the various Spanish regional governments have promoted the creation of additional resources dedicated exclusively to the care of female victims of gender-based violence. These resources, which have the objective of bringing attention to this serious social health problem, usually depend on institutions other than the National Health System. In Extremadura , the Psychological Support Points are units framed in the Attention to Victim-Survivors of Gender Violence Network and developed within the actions undertaken by the Regional Board of Equality and Cooperation for Development. These units were set up more than a decade ago with the purpose of offering advice, diagnosis, and intervention to female victims of gender-based violence who come to these centres voluntarily, or are referred from some other health, community, or educational centre [17]. With this, the target users of these units include not only adult females, but also their minor-age sons and daughters, as well as female adolescents who are victimised in their romantic relationships. Since their foundation, PAPs have steadily been gaining in importance, as is reflected in the numbers of patients attended. Focusing attention on female adolescent patients who are victim-survivors of gender-based violence, one can observe a clear evolution reflecting the growing presence of this phenomenon in society. Thus, in 2016, these resources assisted 16 adolescents in Extremadura who were victim-survivors of genderbased violence, as well as 1 victim of sexual abuse [18]. These numbers grew in 2018 to 19 adolescent victim-survivors of gender-based violence being treated and 15 adolescent victim-survivors of sexual abuse [19]. Recently, the 2021 data revealed that the number of minor-age victim-survivors of gender-based violence assisted in Extremadura PAPs had grown to a total of 30 [20]. In contrast, the resources allocated to care for victim-survivors of gender-based violence do not seem to be increasing at the same rate. In this context, and taking into account all the problems found, the main purpose of this study was to analyse a series of interviews with psychologists from the PAPs in the main cities of Extremadura about adolescent dating violence. The objective of these interviews was to determine and integrate for analysis the vision and knowledge that psychologists have about victimisation in adolescent gender-based violence. Specifically, the intention was to determine: i. Organisational aspects of the PAPs, the resources they have, and the strengths and needs of these public attention and intervention centres for victims of gender-based violence. ii. The knowledge that the psychologists have about the characteristics of victimsurvivors, the most prevalent types of violence among the adolescents who come to the PAPs, the maladaptive problems and ideas that these victim-survivors present, and the needs that have to be addressed during the intervention process. Subsequently, the questions asked during the interviews were divided for analysis into three different categories that integrate all the aspects addressed in a complete and comprehensive manner. The present research is, to the best of our knowledge, the first qualitative study carried out in Spain exploring the phenomenon of adolescent dating violence from the perspective of the psychologists who are currently working in assisting the victims. --- Materials and Methods This study was designed on the basis of the criteria established by COREQ [21] for reporting and publishing qualitative studies. This method is based on a 32-item list that guides the design, the collection of information, the description of the research sample, and the analysis of the data, among other aspects. Likewise, this research was carried out within the framework of a broader project developed in three different phases . The project aims to assess and analyse gender-based violence in adolescent couples in a broad manner, taking into account the perspectives of the victim-survivors , of the primary care doctors who are in a privileged position to detect cases of violence , and of the psychologists at the PAPs, specialised in interventions with the said victim-survivors . The first phase reveals the characteristics that teen dating violence has in actual society and how factors such as sexism, moral disengagement, negative emotions, or the use of substances such as marijuana can affect victimisation [11,[22][23][24]. The second phase reveals the strengths, weaknesses, and needs that primary care doctors present in the diagnosis and attention to the particularities of each woman, and also provides some solutions identified by the physicians themselves [7]. This last phase intends to offer complementary information that can be added to the rest of the results and conclusions revealed in the previous phases of the project. The PAPs are integrated into the network created by the Junta of Extremadura to provide comprehensive services in matters of gender-based violence, including specialised care for the victim-survivors and their children, and for minor-age victim-survivors of said violence. The functions of the PAPs focus on the prevention, detection, intervention, and awareness of gender-based violence. This study belongs to the third phase of the study: Identification of the strengths, weaknesses, and needs of the PAPs focused on support for victims of gender-based violence. --- --- Procedure Prior to the beginning of this third phase of the Research Project, authorisation was obtained from the general director of the Instituto de la Mujer of Extremadura, as well as from the Board of Equality and Cooperation for Development of the Junta de Extremadura. Once obtained, authorisation for the interview was requested from the management of each of the PAPs. Likewise, legal advice and approval was requested from the Bioethics Committee of the University of Extremadura . Once these authorisations had been obtained, the ten PAPs were contacted by telephone. In this first contact, the objectives of the study, content of the interviews, and the approximate duration were explained. Likewise, the anonymity of all participants was guaranteed. The interviews began in 2018 and continued throughout 2019. All the interviews were carried out ad hoc by the principal investigator of the research project, who personally visited all the PAPs after making an appointment with the psychologists. All the interviews were conducted in a quiet environment, inside the psychologists' office within the PAP, and ensuring that there was enough time to answer and discuss the questions . Each interview conducted was recorded in an audio file, after obtaining the consent of the participants. Likewise, they were all transcribed for analysis. This transcription was performed by one of the project researchers. --- Interview The interview was semistructured, prepared in the form of a guide, following the objectives set in the research, but allowing for some flexibility in the questions. To this end, the research team determined the format and type of questions to be used, their wording, sequence, and order. Likewise, the topics to be addressed were identified, taking into account the results obtained in the first and second phases of the research. The first phase had focused on the collection and analysis of data from 2577 adolescents between the ages of 14 and 18. This analysis allowed the researchers to obtain a deep understanding of the phenomenon of adolescent dating violence, its characteristics, problems, and risk indicators. The second phase of the research included the deductive/inductive thematic analysis of interviews conducted with 95 primary care doctors from the public health system of Extremadura. This analysis provided an in-depth view of the strengths, weaknesses, and needs of the Extremadura public health system in relation to the detection and care of the victims of gender-based violence in adolescent dating relationships. The results of both previous phases of the research, as well as an extensive review of the scientific literature, were taken as the basis for the preparation of the interviews and the experiences lived daily at these PAPs for victimised females, these being essential elements of knowledge for the psychologists. The interview guide contained 12 open-ended questions, divided into three different categories that included distinct key questions. These questions were aimed at obtaining an in-depth view of the organisation, coordination, intervention, monitoring, and main problems faced by the professionals working in the PAPs. The following table presents the main themes and key questions that formed the complete guide of the interviews carried out. To ensure the understandability and efficiency of the questions, these were sent to experts in clinical psychology to thus maximise the value of the interview. --- Data Analysis The transcription of all the interviews was carried out by one of the psychologists belonging to the research group in charge of the project, who was already familiar with the objectives of the study and the results obtained in the previous phases of the research. These transcripts were read and reviewed by all the team members to familiarise themselves with the data and discover the internal structure to be analysed. After familiarisation with the data, the analysis of the transcripts was performed by means of the method of structured content analysis, a method widely used and described in various studies [25][26][27]. Additionally, deductive/inductive thematic content analysis [28] was used as a referent, which was aimed at identifying, finding, and analysing the common underlying patterns in the different interviews carried out with the goal of defining, naming, and elaborating the final report. Thus, the first phase of analysis was developed through a deductive analysis, creating an initial coding system based on the main themes and questions included in the interview guide . These codes had to be interpreted by the researchers who then assigned them labels based on the information the psychologist expressed. Once the codes had been applied, the information was summarised in short sentences. For example, an explanation that provided details about different aspects of the abusive relationship was classified as characteristic of gender-based violence in teen dating. Next, the second phase of the analysis continued by performing an inductive analysis of the transcripts, with the goal of detecting subcategories and analysis codes within the said subcategories. This step again required the interpretation on the part of the researchers in order to establish the relationship between the previously established discrete inductive codes. With this, the classification of the codes was carried out based on their actual content, as well as depending on the guide provided by the questions on which the interviews were based. In this way, the greatest possible number of subcategories and codes were identified. In this sense, for example, a participant explained when answering the question of problems detected in adolescent victim-survivors how these victim-survivors have incorrect thoughts about their relationship; this answer was classified as distortions and maladjusted beliefs instead of characteristic of victim-survivors. In both phases of the analysis, the research team involved in the project met on several occasions to discuss and compare the categories and themes extracted, as well as the selected text passages in relation to those themes. During the process of analysis, the initial code list was progressively redefined. These codes were finally organised into topics and subtopics. Additionally, to analyse the data objectively, summaries of the responses obtained in the interviews were created through the construction of a table-grid that additionally included the percentages of the different responses provided by the experts. Finally, at a second moment, the preliminary work carried out was reviewed again to guarantee the validity and reliability in the coding and interpretation of the data, making various contributions and clarifications. --- Results With respect to the research questions, the following categories were deduced: Organisation of the PAPs, Victim-survivors, Intervention. Each category was divided into subcategories that cover different topics or thematic content, as can be seen in Table 3. Finally, some of the subcategories identified were divided during the analysis into distinct codes that allow different aspects, although related, to be differentiated within that subcategory. The different phases followed during the analysis , as well as the categories, subcategories, and codes established, are shown in Figure 1. A summary table is added that includes the main answers and the frequency of the responses that the psychologist gave to these. --- Table 4. Summary of answers and frequency of responses given by the psychologists. --- Questions Answers and Frequency of Responses Provided by the Pyschologists How do you start working in the PAPs? Competitive civil examination What are the prevalence statistics of teen dating violence handled by PAPs? No data 17-18% of teen dating violence What is the victim-detection procedure followed in the PAPs? Family Equality Primary health care Education Friends Police Mental Health Court --- Are there collaboration protocols with educational or health institutes? There is no protocols for adolescent victim-survivors Territorial roundtables How are these protocols implemented? No protocols What are the risk and vulnerability factors of those who are subjected to this type of violence? Romantic love Normalisation of violence Patriarchal society Sexualisation Friends Pooverty Social inequalities Porn Family and culture What are the psychosocial traits that characterise the victims of teen dating violence that you see in your practice? Low self-esteem No profile Dysfunctional family What are the sources of information to which adolescents turn to detect that they are in a situation of victimisation? Internet Friends None Teachers What are the most common types of abuse that you must treat? Psychological Sexual Emotional Verbal Physical What are the sexist stereotypes of adolescents? Gender stereotypes False empowerment --- Category 1: Organisation of the PAPs This first category deals with the way in which the PAPs are organised. Different aspects were analysed, such as the psychologists themselves who are part of these care teams for battered women and how they come to form part of them, the documentation that is available to them, and how they organise themselves to participate in prevention programs at the same time as they carry out their intervention tasks as psychologists with the victims, or the protocols used to coordinate the actions of the different professionals who come into contact with the victims of gender abuse. In this way, four subcategories were established: Human resources, Documentation, Organisation, Coordination. --- Subcategory 1: Human Resources Employment status and type of contract that the psychologists who work at the PAPs in Extremadura have. Most of the psychologists interviewed explain that unlike in the case of primary care doctors, the employment situation of PAP psychologists is highly precarious. Far from depending on the Board of Health and Social Services of the Junta de Extremadura, they usually depend on the Town Councils of the cities where they are located. These councils hire, via competitive civil service examination , one psychologist every year, sometimes leaving the service without responsible professionals for several months, and therefore without any kind of attention for battered women. This way of organising the PAPs poses obvious problems for the psychologists. In addition to the continual job insecurity they suffer, the fact that the professional responsible for the PAP is constantly changing implies an added difficulty when it comes to creating the climate of trust and intimacy necessary for the victims to tell, honestly and without fear, the reason why they have come. Additionally, the fact that for several months of the year there is no psychologist in the centre also prevents many women and adolescents from going directly to the resource, which is another very marked difference with respect to the way in which the primary care centres in the Extremadura health system work. The latter, due to their solidity and permanence over time, encourage patients to feel that their doctors "know" all the members of the family perfectly, and to be able to turn to them for any problem or doubt about their health. On the other hand, most of the patients come to the PAPs referred from other areas. In this way, one of the psychologists interviewed revealed: "Of course, but because I've been here for two years. Before there was another companion. Well two years . . . less. It's that job insecurity also . . . I mean, I started in 2018, in June, until December. In December you get fired. I had to present myself again to the "opposition" exam, I entered again in June and it is until December. In other words, here there are 6-7 months when this stays empty". --- Subcategory 2: Documentation The documentation and data that the PAPs of Extremadura make use of to know the data of prevalence and evolution in relation to the phenomenon of gender-based violence. During the interviews, questions were specifically asked about the annual prevalence statistics in order to analyse how many adolescent victim-survivors received treatment and help, as well as the evolution of the treatment and the phenomenon itself over time. In this sense, however, it was surprising to find that half of the psychologists interviewed explained that they did not have any data of this type, despite the fact that the said data are collected, stored, and shared through the pertinent reports. In this way, one of the psychologists interviewed indicated: "No, because we don't even have data within the women's institute itself, which is something that strikes me, because we do send the data, but then there is no website where we can enter and see the data. Just like we send that data developed by age, by . . . we don't have it". Likewise, another psychologist added: "We do not have these data. I assume they are being collected somewhere. I don't know". With this, a large number of these professionals are unaware of the cases that occur annually throughout the region, or the way in which the phenomenon has evolved over time. --- Subcategory 3: Organisation The way the PAPs collaborate with other entities to detect cases of gender victimisation in the adolescent population. Likewise, aspects such as the participation of the psychologists of the PAPs in different prevention programs, while they continue with their intention work in the units, were also addressed. Beginning with the detection of the victims, the psychologists interviewed explained that most of the victim-survivors came to the PAP by referral from other areas. Thus, the detections were not carried out by the psychologists themselves, but other people from the victim-survivors' environment were the ones who did this, thereby carrying out an essential task. In this regard, one of the psychologists belonging to these PAP units revealed: "No, no detection here. That is, the PAP as a PAP, no. The office of equality, yes" . . . "Apart from the fact that this point is not included in the intervention protocols of the PAPs. It is collected in what is the intervention with the women". With this, the commonest places where victimisation is detected, according to the professionals interviewed, are the Oficinas de la Mujer , secondary schools, public primary health care centres, and in the most serious cases, the police or the courts. With this, collaboration and coordination between these areas and the PAPs becomes essential. "Many times, in the courts, when there is already an accusation and such, they already give them all the information, which includes our services. This includes the home, so we call, many times they come. Thus, the path can begin from any environment. From the health field sometimes too. Referrals from health centres also because they sometimes have a case there". In this regard, all the psychologists interviewed pointed out that there is no type of document, protocol, or official body that establishes or regulates the collaboration between institutions: "There is no protocol that establishes a coordination after referral, okay?" Nonetheless, some of the psychologists pointed out that despite the nonexistence of any official coordinating protocol, there is the resource of the so-called "territorial roundtables" . These "roundtables" are meetings that are held periodically which involve bringing together professionals from different fields to share information and coordinate their actions . They therefore have great theoretical potential for the prevention and intervention of gender-based violence in adolescence. However, it is noted that most of the professionals invited usually do not attend, so that these meetings do not manage to fulfil the objectives they had when they began to be held. Thus, P9 explained: "There are coordination roundtables at local level, and then at territorial level, where the social, educational, and health services are supposed to go . . . whatever. The health workers never come . . . and neither do other professionals". --- Category 2: Characteristics of Gender-Based Violence in Adolescent Dating This category corresponds to an analysis of the characteristics presented by the victimsurvivors of adolescent gender-based violence who attend the PAPs from the perspective of the psychologists responsible for these units. These professionals have first-hand experience that allows them to build a broad and detailed vision of what these victimsurvivors are like, and thus are able to point out not only their general characteristics, but also contextual factors, and indicators that may be of great importance in the prevention of this phenomenon. In this regard, the analysis detects three different subcategories: Victim-survivors; Commonest types of violence; Family. --- Subcategory 1: Victim-Survivors The profiles and main characteristics of the victim-survivors who attend consultations at the PAPs to be treated, taking into account psychological, social, cultural, and economic characteristics. Thus, this subcategory is divided into the following analysis codes: detection; psychosocial and personality characteristics; cultural characteristics. --- Detection A large proportion of the psychologists interviewed indicated that the detection of victim-survivors is not carried out at the PAPs, and that they usually come derived from other areas. Thus, it is common to find that educators, when situations of violence are detected, recommend the victims or their families to go to the PAP for an appropriate evaluation and intervention. Likewise, it is also relatively common for mental health centres, given the saturation of the mental health service, to refer victims of gender-based violence to PAPs to receive faster care. Thus, in this regard P2 noted: "Primary Care doctors perhaps refer more often to the Mental Health service. Indeed, to Mental Health. What happens is that Mental Health then often refers to us. Of course, because the waiting time in Mental Health is two months, even three months or three and a half months, and, of course, here that doesn't happen". Likewise, P1 pointed out that usually the victims come to these PAPs following the advice of their own family, school, friends, etc., and they rarely come on their own initiative. In this sense, collaboration with the school and the family can improve the comprehensive care and the satisfaction of these psychologists with their professional work. --- Psychosocial and Personality Characteristics Most of the PAP psychologists interviewed pointed out that there is no exact psychosocial profile that can be generalised to all the adolescent victim-survivors who attend their consultations. This means that the adolescents who are cared for in the PAPs come from diverse sociocultural and economic backgrounds. This fact is reflected in the response given by P8: "Gender-based violence is occurring in all social spheres, at all economic levels, in all types of education, in professions of all types, and the same continues to occur". In general, this same situation of diversity is reflected in the search for a specific profile regarding the personality characteristics of victims. Thus, the participating psychologists explained that it is impossible to establish a personality model associated with gender victimisation in adolescent couples, as they had found a great variety and heterogeneity of their psychological traits. --- Cultural Characteristics Regarding the influence of culture, some psychologists believed that certain ethnic groups, such as the Roma or Arabs, have customs and social values that abet victimisation, with this aspect therefore linked to the characteristics of the families from which the victims come. Belonging to a "traditional" family encourages the adolescents to behave with their partners in a similar way as their parents do at home, and this behaviour is also supported by the parents themselves. More specifically, P5 revealed: "What we, that is, the Spanish population do not approve of is behaviour that the Moroccan population thinks is normal". Additionally, the psychologists opined that it is extremely difficult to access these victims of gender-based violence, since when any type of action is carried out to approach the adolescents or their families, these actions tend to be rejected due to the prejudices that these cultures usually have towards psychology. --- Subcategory 2: Violence The commonest types of violence suffered by adolescent victim-survivors who attend consultations at the PAPs. In this regard, all the psychologists who participated in the study pointed out that psychological violence is predominant in adolescent dating relationships. Within psychological violence, there are various types, the commonest being emotional abuse, blackmail, insults, control, etc. Nonetheless, all the psychologists who attend victim-survivors at these PAPs pointed out that, although the adolescent aggressors rarely seem to resort to physical violence, both this type of violence and sexual violence are also present in these cases, often hidden under the halo of normalisation that makes the victims unable to recognise this type of abuse until reaching more advanced phases of therapy. Thus, aggressors who force victim-survivors to have unprotected sexual relations, or pushing and pulling, tend to be seen as showing forms of normal behaviour that, on many occasions, are interpreted as being forms or manifestations of love when they are accepted. In this sense, P11 pointed out: "It is psychological violence, and sexual violence. In adolescents, sexual violence is very common . . . To say, if you don't sleep with me I am going to leave you. If you don't sleep with me I leave you. So, you will see". --- Subcategory 3: Family The commonest types of families that go to consultations at the PAPs. This category analyses the types of communication and collaboration that is established with families in the PAPs when their daughters begin a psychological intervention process after victimisation has been detected. This subcategory is divided into two different analysis codes: characteristics of families, and communication. --- Characteristics of the Families Most of the psychologists from the PAPs indicated that the families are completely different from each other, and that they, the psychologists, are unable to establish a clear pattern of any family nucleus associated with adolescent victimisation. Therefore, aspects such as the socioeconomic or family cultural status of the adolescents who attend the units are varied. Nonetheless, the participants also noted that the characteristics the victimsurvivors present and the way the parents relate to each other are vital, not only to detect victimisation but also to detect how the victim-survivors relate to their partners. Thus, the conservative families in which gender stereotypes and sexism are predominant seem to be strongly associated with the girls having a similar role in their dating relationships. Likewise, it is especially noted how many mothers seem to tolerate this type of behaviour due to the normalisation of violent processes, which causes adolescents not only to assume these values as their own, but also fosters the perpetuation of victimisation. In this regard, P8 noted: "If at home there has been, for example, this type of relationship, it is more difficult for them to leave. It is also a factor that we have. If her parents, for example, have a healthy relationship, it is easier for her to realize that her relationship is not like her parents', and there she can make a . . . But of course, if your relationship is exactly the same as your parents in an environment of abuse and such, because it will be much more difficult to get out of there, of course". --- Communication Communication is a key element in the assistance provided to adolescent victimsurvivors of gender-based violence from a dual perspective. On the one hand, communication is revealed as being essential in the processes of prevention, care, and protection of the victim-survivors. Thus, the psychologists interviewed revealed that communication with the families is not problematic. In most cases, the adolescents go to the PAP consultation when the situation is already serious, so the families are highly motivated to follow the instructions of the professionals who are helping them. Nonetheless, the psychologists interviewed pointed out that the interaction with the parents is minimal, being reduced to the first contact and familiarisation interviews, to subsequently generate an environment of trust with the victim-survivor. During this stage, the adolescents are the protagonists. In this way, it is possible to build a relationship of trust in which the young victim-survivors understand that, only in specific cases related to sensitive issues that entail some type of danger for them and that are dealt with within the consultation, would their parents be informed. Thus, P3pointed out that: "If I believe that an issue needs to be discussed with her mother, I tell the adolescent that I want to discuss it with her mother. Later, there are things that I discuss with the mother, especially the mothers, without telling the adolescent, but I never go into intimate things that she has told me". And on the other hand, the psychologists explain that it is necessary to communicate with the parents to prevent them from blaming their daughters. Some families seem to hold the victim-survivors themselves to be responsible for the situation they are experiencing, especially when the adolescents resume the relationship with their aggressors after having broken up with them for a while. Thus, a more serious situation ends up being generated, since the girls may even hide the situation they are experiencing in order to avoid feeling judged by their parents. In this regard, P2 indicated: "But I, if there are times that, with the parents, especially if I see that it is causing her discomfort because . . . they tell you about it in therapy. I don't know, as at home they blame her a lot for that. Or imagine that she has gone back with him, or whatever. So, if it makes her uncomfortable, there are times that I talk to the families to explain to them what the process of gender-based violence is, what the cycle of gender-based violence is, and explain how they can help". --- Category 3: Areas of Intervention The third category analyses the aspects in which the psychologists must intervene during consultations with adolescent victim-survivors within the PAPs. In this category, two different subcategories were found: Problems, Distortions and maladjusted beliefs. --- Subcategory 1: Problems During the interviews, most of the psychologists who participated in the research coincided in pointing out that all the victim-survivors present a series of common difficulties. These problems are directly related to the way in which adolescent girls conceive of love and relationships. In this sense, the idealisation of love that popular culture promotes through different representations causes young girls not to understand the reality of relationships. In this sense, certain behaviours such as jealousy, control, obsession with the partner, etc. are given a romantic character. All these aspects, which are experienced by the victim-survivors as manifestations of interest and love, lead to situations of psychological and emotional abuse from which it is difficult to escape due to the lack of awareness that adolescent girls have about these situations. In this regard, P4 indicated: "They do not detect the situation because, now more than ever, I see the difference with my generation. Now there is like an exacerbation of the myths of romantic love. And there is an easiness in the control. For example, you talk to the adolescents, right? When they are already in consultation, right? And they come for a few reasons, either a physical attack... or... that is, something more serious. When you start talking to them about behaviour of . . . emotional abuse or psychological abuse, at first, they don't identify it because they think that's part of the relationship. In other words, jealousy, control, which is very easy now, right? With social networks, with WhatsApp, you know? So, of course, it's like . . . it's difficult, once they come in, you can already do a restructuring, but at first they see it as if that's normal". --- Subcategory 2: Distortions and Maladjusted Beliefs In relation to the distortions and maladjusted beliefs that adolescent victim-survivors usually present, all the psychologists interviewed specified that the adolescent girls who come to their consultations share a series of beliefs related to female empowerment and false equality. This false empowerment and sexism disguised under the paradigm of benevolent sexism are causing gender prejudice to be more present than ever among some adolescents. In this way, P5 commented: "And many times they are girls who believe they are more empowered, or the false empowerment. That showing themselves that being more sexualized, that all these things on the social networks, is a big risk factor . . . they believe they are more empowered, and they suffer more relationships of harassment". Thus, many of the victimised-survivor adolescents feel that within their relationships, they have the same power that their partners have over them. Therefore, to show said power and position they have regarding boys, they themselves become aggressors, exercising the same type of role, trying to copy the behaviour that their partners have with them. In this sense, P7 indicated: "The problem now is that many of them say that they are the same as . . . that is, it is not that they believe that they are to blame for the situation, but that they have similar behaviour. So, you talk to them about control, and they tell you, but I also control him. Because I'm jealous too, you know? It is as if it has been equated . . . they think that they do have an equality in their relationship because they have behaviour that is similar to what he has with her". --- Discussion This study has explored, from the point of view of psychologists, the phenomenon of gender-based violence in adolescent dating. To this end, a series of interviews were conducted that were recorded in audio format and later transcribed to be analysed following a deductive/inductive type of analysis. The analysis of the results provides relevant data not only about the phenomenon of gender victimisation in adolescent dating, but also allows one to observe the positive and negative points that the PAPs have. In this sense, the study contributes to understanding the strengths, weaknesses, and needs that exist within the field of specialised psychological care for adolescent victim-survivors of gender-based violence, as well as the characteristics, errors of thinking, and main aspects on which to intervene during the therapy process. Additionally, the results found complemented the previous phases of our research developed in teen dating violence, providing accurate information to design prevention programs with detailed information adjusted to the characteristics and current reality of adolescents. --- PAP Organisation Starting with the organisational structure of the PAPs, the analysis of the results brings out the job instability to which these units are subjected at the level of human resources. In contrast to what is the case with medical professionals who work in the area of primary care where stability is one of the strengths, the situation of the psychologists specialised in caring for victims of gender-based violence at the PAPs is more unstable, with the selection process being repeated annually. This situation additionally implies that the unit remains closed during this period of time, thus causing a delay in the interventions, which even come to a standstill for several months. With this, the provision of greater human and financial resources to the PAPs is essential to be able to optimise the effectiveness of these units [29]. The first direct consequence entailed by this way of organising human resources affects the victim-survivors of gender-based violence. Thus, neither the primary care doctors from the public health service nor the victim-survivors themselves can count on the psychological assistance resource that is offered by the PAPs for long periods of time, which leaves going to the mental health service of the public health system as the only alternative. This area also has its own problems, since in many cases, its units are overwhelmed, making quick attention impossible [16,30]. Likewise, and additionally, the fact that these PAPs do not offer their psychological care services throughout the year makes it difficult for the potential users to know and recognise this resource. With this, the detection and subsequent care of potential victim-survivors is further complicated. In this sense, one of the main strengths of the Spanish public health system is the application of a primary health care model that promotes the stability of health professionals, and with this, the assurance of psychological care for the users. In this way, the doctors and nurses care for the same patients over long periods of time, specifically from adolescence to the last stages of people's adult lives. This fact allows the relationship of trust between the doctor and patient to be strengthened, thereby encouraging the users to go to their Primary Health Care provider when they need to [8]. In this sense, transferring to the PAPs this model and the positive aspects that the Public Health Care system presents could represent a great advance in the care of victims of gender-based violence. Likewise, another finding regarding the functional organisational network of the PAPs for victimised-survivor females highlights the lack of coordination with other local resources that are equally specialised and related to the intervention respecting female victim-survivors of violence, as well as with other professionals of different fields in the same territorial zone in which the different PAP units operate and where the events took place. With regard to the availability of technical resources that help to provide correct attention or intervention, the psychologists interviewed declared that they do not have an official protocol that specifies the steps that must be adopted when faced with an adolescent female who is a victim-survivor of gender-based violence. It is noted that this finding is not an isolated fact, and has been pointed out in other studies carried out in different areas of Spain. Thus, it was found the same type of problems in the Principality of Asturias , revealing the existence of organisational barriers that make it difficult to care for victimised-survivor females [31]. Those authors note that aspects such as the variability among registries, the lack of inter-institutional accessibility to them, or even their simple absence, constitute a major problem that greatly complicates the effective care of the victims. Gallego and Torrejón [32], in their recent study carried out in the Region of Murcia about the care for the victims of gender-based violence, reveal that among all the possible needs detected, the area with the most margin for improvement is precisely the coordination among the resources that assist the users, with this aspect being pointed to by more than 30% of their sample. The psychologists interviewed made clear some attempts to mitigate the effects of the organisational deficiencies found. Thus, the participants referred to the intention of linking the different professionals involved in the detection and intervention of victimised females through the organisation of recurrent meetings or "territorial roundtables". The need for this type of connection had already been noted as being vital in previous studies. For example, a study that analysed a total of 2503 questionnaires responded to by health staff from 24 hospitals revealed the need for a more dynamic administration, as well as the need to improve coordination between the different units and services so as to increase the quality of care for patients [33]. Other study [34] pointed out the importance of properly managing the resources that are available in the care of victim-survivors of gender-based violence, especially highlighting the need to coordinate the sectors of education, social services, legal attention, police, etc. Nonetheless, in this regard, the territorial roundtables do not seem to be effective as an attempt to connect and exchange data. Thus, the psychologists interviewed revealed that certain professionals, such as educators, doctors, police, etc., do not attend these exchanges of experiences, possibly because some of them do not know about them or lack the information that informs about the holding of these meetings, while others subordinate their assistance to their work responsibilities. These criticisms were also pointed out by the medical professionals from the primary care centres of the public health system. In this way, they highlight as a fundamental aspect of intervention the need to coordinate all the resources, both material and human, with the aim of providing a comprehensive, specialised, and multidisciplinary intervention for victims of adolescent gender-based violence [7,35]. Bearing in mind that the phenomenon of violence in adolescent dating is heterogeneous and brings various professionals together in its prevention and detection, referral, and care, the disconnection found between the various resources that provide care to victim-survivors does not seem to be effective or functional. Thus, the absence of contact could even be the reason why the psychologists who work in these specialised units rarely participate in the prevention programs that are initiated in educational centres, for example. The very specialisation of the PAPs would imply a certain degree of isolation, which would make them largely unknown to the general population, as well as to professionals who work in other areas related to health. Thus, one of the greatest challenges to be faced at these specialised units is not only focused on achieving adequate coordination and connection with the rest of the services involved in caring for victim-survivors, but also involves increasing the visibility of this type of care service aimed specifically at victimised-survivor females [36]. --- Teen Gender Violence Characteristics Another relevant finding related to the care that the psychologists provide to victimsurvivors of adolescent gender-based violence reveals that the psychologists who work in these specific units indicate that they do not have any special difficulties in communicating with the families. This fact facilitates care for the victim-survivors, while simplifying the establishment of a relationship of trust during therapy. In this way, this care system for victimised-survivor adolescents adopted by the PAPs brings together the advantages of autonomous models of care for patients, as well as the so-called "health coaching" models that reveal the importance of active participation in their treatments [37,38]. In this sense, the victimised-survivor adolescents become the protagonists of their own treatment, even being aware of the exceptions established to the confidentiality of the data that they may reveal during therapy. Far from lying, the psychologists explain directly to the adolescents that in the event that situations or facts that are potentially dangerous for their own life are revealed during the consultation, the necessary actions would be put in place to prevent the said dangerous situation from being perpetrated, with communication with their families and the disclosure of the said information to their parents being included among these actions. This active communication encourages the patients to get involved in their treatment, avoiding passivity and disconnection [39]. This type of approach additionally avoids the loss of confidence that would be generated in the victims when they discover that they have been lied to in some way. This is a documented phenomenon, for example, in terminal cancer patients who discover that their doctors have been withholding relevant information relative to the course of their disease [40]. Nonetheless, the psychologists point out an exception to the few difficulties they have in their interactions with the family. Specifically, the social and cultural origin context of the adolescent patients and their families transforms the communication when it encourages the acceptance of violence and traditional gender prejudices and stereotypes. In this regard, the psychologists interviewed specifically explain how Muslim victim-survivors are probably the most difficult to care for. These young adolescents receive education and values influenced by the culture of their families in which they do not usually promote equality, but rather the opposite, submission towards males. The permanence of sexist values and traditional gender roles in these cultures reinforces discrimination and the assumption of the role of victim-survivor even in younger women [41]. In contrast, Spanish victim-survivors present different characteristics. For example, although it is true that gender stereotypes are still present in Hispanic culture, the evolution of the society and the education that young people have received has led to a new generation with fewer stereotypes, who know what gender violence is, but at the same time, consider this phenomenon to be a problem linked to adults [42,43]. Therefore, hostile sexism seems to be linked with conservative ideology [44], while benevolent sexism shows its influence in today's society [22,45]. With this, the paradigm shift that must be made when caring for culturally different patients must go beyond overcoming language barriers [46]. It is also essential to understand that different cultural backgrounds have an influence beyond the acceptance of traditional gender roles. In this sense, misunderstandings can often arise between what the psychologist prescribes for the recovery and what the patient understands should be done. In this way, it has been noted that immigrant populations, especially the Chinese and the Moroccan, present additional resistances related to psychology and psychological treatments due to the prejudices that these cultures continue to present in face of this science and the stigma of mental illness [47,48], which prevent these potential patients from being able to enjoy a specialised and integrated care [49]. Lastly, it is also important to understand with regards to foreign victim-survivors that, on many occasions, they depend directly on their partners because of administrative reasons, even when they are young. Many of them may be in the country irregularly, and do not trust the authorities [50], a fact that leaves them defenceless before the law where the condition of migrant prevails over that of victim-survivor, especially when it is not possible to prove abuse [51]. Given the difficulties generated by the problems encountered, similarly to the rest of illnesses, the solution could require psychologists to adopt a more leisurely, empathic, and comprehensive approach [40], an aspect that, however, is not easy to achieve due to the limited human resources that the PAPs have and the time these professionals need to build a relationship of trust with the victim-survivor, as it has been pointed out in studies with different ethnicities and cultures [50]. The lack of coordination between all the professionals involved, as well as the lack of an integrated overall analysis of the situation of migrant women, and the problems with access to economic aid, make the situation of these victimisedsurvivor females even more difficult to address [51]. Once again, the establishment of a coordinating system that regulates the interactions between these services could be the key to resolving the problems detected in the care of foreign victims. --- Intervention Areas Finally, the data analysis reveals how gender prejudices and sexism play a major role in the explanation that the psychologists make of the phenomenon of adolescent dating violence. In this way, these characteristics are present in all the cases that are attended to in the PAPs' consultations. Nonetheless, the form in which they appear is different. While in Muslim cultures the beliefs in gender roles are associated with the traditionalism and conservatism that is typical of their culture and religious beliefs, in Spanish victim-survivors this kind of stereotype is associated with completely different factors linked to the evolution of society. In this sense, false empowerment [52,53] is mentioned by most of the psychologists interviewed. This false empowerment encourages women to develop a false sense of autonomy and freedom while living in a society that continues to promote a patriarchal structure [54] in which the sexual objectification of women [55] and benevolent sexism [51, [56][57][58] are more present than ever, especially among victimised-survivor adolescents [59]. Thus, the psychologists interviewed indicated that victimised-survivor adolescents in Spain arrive at consultations expressing empowerment and liberation, as well as showing great confidence in the equality of the role they play within the relationship. This fact contrasts with the psychological, emotional, and sexual violence that marks the abuse that their partners exert on them. In this way, according to authors such as [60], it would perhaps be more accurate to interpret that in today's society, women are not being empowered, but that there is rather a neoliberal interpretation of feminism. From the PAPs, it is explained that a large proportion of the adolescent victimsurvivors develop erroneous beliefs and maladjusted behaviours that end up being reflected in the perpetration of behaviour that is similar to what they receive from their aggressors. This phenomenon had been noted previously [61], and more recently it was revealed that more than half of adolescent victim-survivors indicated that they responded to violence with violence [51], similarly to the case in the context of cyberbullying with aggressive victims [62]. In this sense, the feminist theory of Dutton and Golant notes that violent responses by the victim-survivors are on many occasions used as a defence [63]. Nonetheless, the explanations that psychologists specialising in gender-based violence provide seem to go beyond revenge or maladaptive forms of coping. Thus, abusive behaviours such as jealousy and monitoring the mobile phone or social networks have spread and have become normalised, being seen as proof of love [64]. These actions, which adolescent girls also feel the right to exercise, appear equally in both members of the couple, due to their normalisation in the context of dating relationships [65,66]. Therefore, it is possible that the normalisation of violence, in combination with false empowerment, is behind this current phenomenon of adolescent dating violence according to the psychologists. Taking the above into account, it could be inferred that the victimised-survivor adolescents are taking as their own the values that today's society promotes through the different manifestations of popular culture [67] and social networks [68]. Adolescents incorporate into their own value system those constructs that justify practically any behaviour or conduct in the name of romantic and ideal love [59,69]. Therefore, the naturalisation of violence goes beyond visible physical and/or psychological violence limited to specific contexts, being expressed through cultural, economic, and social patterns established by the heteropatriarchal power groups [70,71]. Thus, violence against females is of a structural character since it encompasses the entire social order. These structural differences, in turn, end up being reflected in the various forms of gender inequality. With this, each and every one of the areas of society , are oriented towards the reproduction of dominance over women [72], and the said exercise of power may be traced at all levels of real life [73]. Finally, all these forms of inequality and dominance end up reflected, at a microstructural level, in violence and abuse directed towards women [74,75]. Consequently, the formal equality that is increasingly being perceived socially by women in general and female adolescents in particular seems to be hiding a much more complex reality that masks inequality under these formal structures [76]. Much of the work of the psychologists specialised in the intervention on adolescent gender-based violence should therefore go through working on these aspects with the aim of making the hidden visible, thereby minimising the chances that the victimised adolescents end up in adulthood becoming women who are also victimised. These findings have implications for policy and practice as they flag the weak points in the attention which adolescent victim-survivors of gender violence receive. Providing more resources is needed, especially considering that the teen dating phenomenon is the type of abuse that has increased the most in recent times [5], even surpassing gender violence in adult couples [1,2]. Despite the efforts that have been made to provide better psychological support to victim-survivors, the lack of connection between all the parties involved , complicates both prevention and intervention actions. This paper also points to the need for a detailed knowledge not only about cultural differences and how these differences affect the way violence is interpreted, but also about the new forms of sexism that affect today's society and the normalisation of violence. Incorporating these factors to formal training of the professionals involved could undoubtedly improve comprehensive care from a broader perspective. --- Limitations This study may present some methodological limitations; fundamentally, those related to the self-reported nature of the data given the difficulty of being able to verify them. Nonetheless, this subjectivity has been minimised in this study by comparing the data with other sources. In addition, having the opinions of the school psychologists and teachers who, in education centres, are in contact with the victim-survivors on a daily basis could complete the conclusions established in the present research. Finally, analysing the risk of burnout in psychologists specialised in gender violence would be another interesting aspect to study, considering that this fact could affect the quality of care provided to victimsurvivors. These limitations could serve as a guide for future research to complete the body of knowledge on this topic. --- Conclusions This study has highlighted the way in which the PAP units, specialising in the treatment of gender-based violence, are organised. Likewise, the strengths and weaknesses have been analysed from the perspective felt and experienced by the psychologists who work in them. Finally, the specialised knowledge that these psychologists have contributed has allowed for a greater understanding of the structural evolution of the phenomenon of adolescent dating violence in a sociocultural context. More specifically, one of the most relevant contributions of this study points to the limitations that specialised care for adolescent victim-survivors of gender-based violence presents. Thus, the lack of coordination among all the agents involved in the detection, referral, and care of these victim-survivors, as well as the job instability to which these professionals are on many occasions exposed, create barriers that make intervention and treatment even more difficult. Likewise, it has revealed the evolution that the phenomenon of violence in adolescent dating is tolerated. In this sense, the very evolution of society that is marking the promotion of gender equality at a formal level continues to point to differences at microstructural levels, which seems to be the cause of false empowerment. This false empowerment becomes the reason that encourages some of the victim-survivors to exercise, to a large extent, the same type of abusive behaviour that they suffer or have suffered from their romantic partners, the aggressors. The cultural silences of society, as well as the individual silences of the victim-survivors, continue to be anchored in an adverse social structure, with all these aspects being observed in the public health system, also considering the individual, family, social, cultural, and institutional factors. From this position, the specialised intervention for victimised-survivor adolescents is insufficient, thus making it necessary to create a system that, with a multidisciplinary approach, can coordinate the linkage of all the relevant agents involved in the process. In this way, true preventive actions can be developed that promote the modification of maladjusted beliefs, while at the same time making the specialised services of attention to victim-survivors known, as well as connecting the different professionals, ultimately facilitating the detection of the potential victim-survivors. --- Informed Consent Statement: Informed consent was obtained from all subjects involved in the study. ---
Gender-based violence in adolescence has become a social health problem that is creating great concern and interest worldwide. In this regard, knowledge of the role taken by the professionals responsible for screening, detecting, referring, and caring for adolescent victims is essential to be able to understand the phenomenon and its characteristics in a practical way. In this sense, psychologists specialising in the care of victims of adolescent gender-based violence have complete and in-depth knowledge, not only of the phenomenon itself and the way in which it is presented in society, but also of the features presented by these victims and the aspects that need to be worked on during the intervention process. Given this context, a series of interviews with psychologists specialised in the care of gender-based violence victims were subjected to a qualitative deductive/inductive analysis. These interviews addressed the psychologists' theoretical-practical knowledge about the adolescent gender-based violence phenomenon. The analysis of the results points to the victims' irrational ideas regarding abusive relationships, to the form in which Psychological Support Points are organised to help the victims, and to the strengths, weaknesses, and needs of these centres for them to be able to improve their operation and effectiveness in providing comprehensive care for adolescents beyond the psychological consultations themselves.
Introduction There is growing interest in the role of parental financial aid on the wealth prospects of their offspring, particularly in relation to achievement of homeownership, since housing assets constitute the single largest share of net worth for households, which tend to increase in value over time [1,2]. This is the case across most advanced economies, especially following their recovery from the Global Financial Crisis [3]. The importance of intergenerational wealth transmission from parents to children for the generation of wealth inequality is likely to increase significantly in the coming years, unless governments regulate its extent [4]. The uniqueness of wealth as an indicator of social stratification stems from the fact that it differs from other sources of stratification and inequality, because wealth accumulation is dependent on the history of family wealth accumulation and thus is independent of individual skills and efforts in the labor market or the educational system [5]. One piece of evidence for this is found in the low correlation between household income and wealth across countries, as compared to the high correlation between IWT and wealth [6,7]. Moreover, unlike income, wealth is shielded from adverse life events and acts as a shock absorber during those times [8]. Scholars of social and wealth inequality have long stressed the role played by IWT on the household level in securing access to homeownership, as well as that of wealth accumulation in shaping socioeconomic inequality [9,10]. These studies show that IWT promotes future homeownership or increases wealth prospects in a variety of social contexts, such as in neoliberal countries, like the US [11] and UK [12] and Israel [13] but also in more income-egalitarian countries, such as Sweden [14], Norway [15], and the Netherlands [16]. While these studies considerably advanced our understanding about how the association between IWT and homeownership is stratified across classes and distributed across countries, they provide less focus on the institutional structures that mitigate it at the macro level. Concurrently, an evolving literature strand of housing financialization and housing regime configurations captures the institutional structures that ease or restrict access to homeownership. That is, it focuses on housing finance systems and government policies that stimulate homeownership or renting across countries [17][18][19][20][21][22]. However, this body of studies is concerned more about differences between countries in the dynamic between macro-level institutions that shape homeownership tenure than about how these mechanisms contribute to wealth stratification potential for the family unit. A few exceptions address the process of wealth inequality in the housing market among young adults by using different proxies of parental socioeconomic status or household income to predict offspring's homeownership under different housing configurations, but they do not measure IWT and its extent directly [23][24][25]. Given the high correlation between IWT, wealth, and homeownership, there is a surprising dearth of studies evaluating the role of parental wealth transmission and its extent when studying the transition to first-time homeownership among young adults under differential institutional arrangements. A recent study documented the importance of IWT in constructing new homeownership typologies for young adults up to current times [26]. However, it did not consider IWT at the household level or the extent of IWT provided, which is a key factor in the process of accessing first-time homeownership. Furthermore, while sorting countries into distinct regimes is helpful for theoretically framing ideological housing structures and making sense of the social world, it also blurs the uniqueness of specific countries' housing patterns, which vary to some degree throughout history, as well as between different cultures and even housing finance systems. Therefore, the current study builds on the housing-regime configuration literature strand, while also keeping country-specific patterns apparent. Our study contributes to the sociology debate about wealth and social inequality from the point of view of housing studies. Specifically, we provide a broader perspective from the literature of housing regime configurations and mortgage market financialization, which have been overlooked in previous contributions concerning homeownership and wealth inequality in the sociological literature . We show how opportunities and constraints are shaped in the housing market and how they vary for the current cohort of young adults, situated under different institutional arrangements at the same point in time. This in turn reveals the complexity of how differential paths to homeownership de-or increase social and wealth inequality within and between different nations in times of intensive growth of wealth inequality and low housing affordability. Further, while many studies have addressed the decline in homeownership among the present cohort of young adults under the frameworks of welfare state retreat, labor market instability, and growing income inequality [27][28][29][30][31], we provide an alternative and more relevant framework centering on the institutions that shape homeownership inequality within and between countries. We also widen the spatial limits in which wealth and homeownership inequality are usually studied by including the region of Central Eastern Europe , since these countries are commonly viewed as super-homeownership societies. Yet, some countries in CEE have witnessed a trend towards increasing wealth inequality, comparable to the situation in France and Germany , and young adults living in these areas are struggling to access homeownership in the absence of IWT [33,34]. We focus on the present cohort of young adults, as this cohort is struggling with many more barriers in the access to first-time homeownership than previous young adult cohorts, which has been raising critical concern in many Western countries and in the public policy debate about housing affordability. Further, given the wealth potential embedded with homeownership and its central role in the stratification system, surprisingly few studies have investigated the dynamic between macro-and household-level factors in contributing to homeownership and wealth inequality among the young [25,35,36]. The present young adult cohort is facing declining rates of homeownership [37] while living in a time of greater uncertainty and instability than their parents [38]. They live in an era of intensified mortgage market financialization, with more households taking up higher mortgage loans [39,40], increased housing price inflation, growing labor market uncertainty, relatively high unemployment rates [41], income stagnation in many Western countries [42], and shrinking welfare benefits. Hence, a corpus of studies has documented difficulties and delays in transitioning to first-time homeownership across countries as compared to earlier cohorts [38,43]. These circumstances increase the dependence of young adults on IWT and have triggered a shift towards re-familialization, as opposed to the de-familialization that is expected at this life stage [25,44,45]. Against this backdrop, we investigate the following two research questions: first, how the association between IWT and homeownership tenure varies between countries and European regions for the present cohort of young adults; and second, how differential institutional contexts moderate the association between IWT and homeownership tenure. To do so, we provide an up-to-date empirical exploration of the association between IWT and the extent of IWT provided on homeownership tenure within and between 20 European countries, using the Household Finance and Consumption Survey database [46]. We then investigate how this association is moderated by different economic and governmental institutions . Our main findings show that homeownership is much more equally distributed between young adults situated in different classes in Southern European and CEE countries, whereas in Western Europe , the quantity of IWT contributes to hierarchical patterns of homeownership, benefitting those from wealthier families of origin. When we added institutional factors to the analysis, we found a consistent contradiction to the welfare state-homeownership "trade-off" hypothesis: that is, when the rental market is more regulated, those who benefited from IWT or who received more IWT have a higher probability of mortgaged homeownership. Paradoxically, when housing finance institutions are more active and generous, the wealthiest young adults hold an advantage in mortgaged homeownership. Therefore, liberal mortgage markets actually serve to enable wealthier young adults to reproduce and preserve their parental wealth status, just as they serve to widen wealth inequality between the older cohort and the present cohort of young adults [38,43]. Further, when housing prices are less affordable , those who have received a higher amount of IWT hold an advantage in mortgaged homeownership. We further discuss the socioeconomic, demographical, and spatial implications of our findings for young adults across countries. --- The significance of homeownership to social and wealth inequality Homeownership embodies material, social, and psychological advantages that increase the owner's stake in society and situates households within the broader social order. It provides economic security against periods of strong inflationary trends and the consequent weakening of the "welfare state" [51,52]. One example of this is "asset-based welfare," where security in old age is based on homeownership rather than a pension [53]. Another example is that young adults in the UK were found to believe that investing in housing assets is the best value-for-money retirement option, due to the neo-liberal policy which significantly reduced old-age pension allocations [54]. Homeownership also has symbolic power as a highly visible representation of status [55]. Owning a more valuable home than average for that age cohort can play an important role in enhancing a young person's status, by showing they are "ahead" in the accumulation of material goods [56]. Furthermore, homeownership provides higher levels of subjective wellbeing, since it is accompanied by feelings of stability and security, while also providing higher levels of residential and life satisfaction [57,58]. Homeownership also influences political actors. This is because homeowners often vote to lower levels of public spending and taxation, since they invest and extract wealth from their housing assets, as opposed to renters. This, in turn, to some extent influences government leaders to shape their political ideology accordingly , in order to attract voter support [59,60]. Mortgage loans are the main mechanism driving homeownership, especially for middleand lower-class young adults with limited resources and support. Such loans are important drivers of social mobility. Thus, differences in access to mortgages and homeownership are fundamental sources of social inequality [13,61]. Access to mortgages also depends heavily on family resources, since IWT enables young adults to become homeowners' sooner, make larger down payments, and acquire higher-value property [62]. The equity accumulated in housing assets also passes down through the generations, contributing to the persistence of inequality [63]. Thus, IWT stratifies access to homeownership and the prospects for accumulating wealth. Nevertheless, a comparative study found IWT to be a weaker predictor for household wealth than income among the elderly cohort [47]. Similarly, in a study on young adults in the UK, IWT was also found to be less important for household wealth accumulation than other sociodemographic characteristics [64]. It is worth mentioning that homeownership can also create financial risks. Housing prices may decline as a result of economic cycles, changes in the attractiveness of a location, and unforeseen external shocks [10]. The global financial crisis of 2008 is a remarkable example of this phenomenon, leading to home depreciation in the US for many lower-class households that had relied on mortgages [48]. The economic turmoil also changed attitudes toward mortgaged homeownership as a secure investment for building future wealth among young adults in the US [49]. While homeownership does entail risks of financial loss, over a long period of time, housing assets have led to more wealth accumulation than other forms of financial investment across advanced economies [50]. Intergenerational wealth transmission and homeownership across countries. IWT is essential for purchasing housing assets in many countries. Previous studies reveal that homeowning parents or parents who transfer wealth to their children increase the likelihood of the latter's becoming homeowners themselves, as was found in France [9], the Netherlands [65], and the UK [54]. One remarkable example consists of recent mortgage deals in the UK, which offer mortgages secured using parents' savings or home equity [54]. The literature also suggests that a socialization process shapes preference towards homeownership earlier in the life cycle, depending on the parents' homeownership tenure. Children of homeowners have a higher likelihood of becoming homeowners themselves [56,66] and the longer a child spends in their parents' home, the higher their likelihood of becoming a homeowner [67]. This leads to the persistence of socioeconomic inequality, as the equity accumulated in housing assets is passed down through generations and sustains inequality [58,63]. In different institutional contexts, different kinds of IWT are more common. The kind of IWT at issue in a given case depends on the relationship between the family, the state, and the housing finance system in a particular country. Taken together, these structure the opportunities available for parents to provide specific forms of financial aid and to meet their children's needs accordingly [45]. In WE countries, the welfare state is relatively generous, the economic security of the elderly and children are seen as the state's responsibility, and the rental market is fairly regulated [42,43,45,68]. Thus, the financial status of parents is relatively secure, and they are able to provide their children with help in the form of gifts to make down payments on mortgage loans or to deal with adverse life events. This enables young adults to leave the parental home at an earlier stage than young adults' in Southern European countries. This process, however, is also connected to culture and norms differences with respect to transition to first-time homeownership of independence versus dependence of children on their parents, between WE and SE countries [69,70]. In SE countries, the mortgage market is relatively inaccessible and public expenditures for family policies are low. These countries also display a legacy of homeownership, while the rental market is tight and expensive, due to a mismatch between supply and demand, exacerbated by stagnating incomes [71,72]. This, in turn, increases the dependency of children on their parents' resources. Thus, it is more common in SE countries for IWT to take the form of housing assets or space . The housing market in CEE countries has its own unique historical context. Under the communist regime, tenants were mostly dependent on the state for their employment, and income inequality was low [73].The state provided low-quality public housing, of which there was a shortage of supply [74,75]. With the fall of the communist regime and the transition to the free market, tenants were given the opportunity to purchase their homes below market prices. This was a widespread practice, which created high homeownership rates in CEE. However, because mortgage markets remain relatively underdeveloped and the rental market is kept marginal, young adults are mainly dependent on their family resources to provide access to homeownership, as in SE [33,34]. One implication of this situation is that young adults make the transition to first-time homeownership later in life, postponing their family-formation stage and thus decreasing fertility rates in the CEE region [34]. In several CEE countries, housing equity constitutes the largest share of the national aggregate wealth, which is more equally distributed throughout the population [76]. However, another study that merged data on the richest households with survey data, found increasing levels of wealth inequality among the Baltic countries comparable with those of Germany and France [32]. This can be explained by the use of different databases, which include data on the wealthiest 1 percent in the CEE. In this context, these developments may change the dynamics between IWT and the extent to which it predicts homeownership. Institutional forces driving homeownership. To investigate the institutional structures that moderate the association between family financial resources and homeownership, we apply an institutional framework originating in the literature of housing studies. Specifically, we draw on the theoretical framework of housing regime configurations in the context of mortgage market financialization. We suggest that the dynamic between those institutional arrangements and the family unit distributes opportunities or constraints for first-time homeownership to a varying extent. Thus, we argue that they also shed light on how the process of wealth inequality is structured at the critical stage of young adulthood within and across countries. Since the 1980s, the mortgage market has experienced gradual finanacilization, which means that the role of housing has shifted housing assets from being seen as a social right, as part of the social good, and as a source that facilitates access to homeownership under state regulations to a source of advancing wealth accumulation in housing assets per se [39,77]. This change was made possible by an institutional shift towards the increasing liberalization of credit. By the end of the 1980s, most lending constraints had been eliminated in nearly every developed country, and financial legislation opened the credit market to lower-income groups. These new regulations created improved access to credit, contributing to the democratization of credit, which enabled previously excluded segments of the population to participate socially and financially in consumer society by means of credit and loans [78]. The restructuring of the mortgage market together with welfare state reattachment, however, shifted the financial risk involved in mortgage loans to vulnerable social groups, with the remarkable example of the Global Financial Crisis in 2008. In this context of mortgage market finanacilization, a growing body of scholarship on housing regime configurations has developed. It is mainly, but not solely, focused on the role of the housing finance system as the main institution that shapes homeownership across countries, which is absent in the scholarship on welfare state regimes [79][80][81] and in the literature about labor market instability and growing income inequality [30,31,37].This framework seems ideal for a comparative study of homeownership inequality among young adults, since it captures the penetration of mortgage liberalization across countries that has burdened the present cohort of young adults with higher mortgage debt than previous cohorts of young adults, although to different degrees across countries and classes [26,82,83]. We next draw on the main macro-level institutions that have been addressed in the housing regime literature to better understand how they moderate the association between family financial support and homeownership within and across countries. Housing finance institutions greatly affect access to homeownership and vary considerably across European countries [18,84,85]. When housing finance systems are liberal and generous, the maximum loan-to-value ratio is relatively high, the down payment needed is low, and access to homeownership is open to the majority of the population [86]. This often results in a more active housing finance system. For example, Northern European and several WE countries have active and generous housing finance systems. Housing prices are relatively high and parents are less capable of helping young adult children with homeownership, but the housing finance systems are also more developed, thus enabling individuals to achieve homeownership with less family support [87]. One important implication of the mortgage market financialization for this study is that it drove up housing prices, causing house price volatility in several NE and WE countries. This led children to revert to parental financial resources to finance mortgage loans, even among NE countries, which are the most income-egalitarian countries in the West [88]. The latest studies based on housing regimes configurations, however, point to a negative correlation between homeownership rates and mortgage debt per GDP across time and countries, although in certain countries this relationship tended to be positive [21,89]. By contrast, in SE countries, housing finance systems are relatively conservative and strict . Thus, access to homeownership is restricted to those who have savings or receive IWT. The relatively conservative mortgage market in SE countries is connected to the historical and cultural context and to the socioeconomic conditions of countries in this region. After the Second World War, stricter rent controls negatively affected the profitability of the housing market, resulting in a strong decline in private rental housing investment [90]. Lack of demand caused the mortgage markets in these countries to develop slowly, and a culture of family support for achieving homeownership emerged, as state property was passed down through families [87,91]. SE countries are also generally less affluent and have relatively modest welfare states [80]. Thus, younger generations depend more on family resources. Yet, in the decade prior to the GFC, Spain, for example, experienced a housing construction boom and housing price increases. This in turn benefited the elderly, enabling them to make transfers to their children [92] while the post-GFC period forced a large share of young Spanish adults into the rental sector [72]. Homeownership rates for young adults have declined more strongly in SE countries than in other European countries over the last two decades [36]. Following this theoretical concept, we expect that when housing finance institutions are less active and less generous, the association between IWT and mortgage homeownership will be stronger. We also hypothesize that, in this context, those who have received greater IWT will have a higher probability of mortgaged homeownership. Kemeny [79,93], developed a distinction between integrated and dual rental markets. Integrated rental systems include countries with corporatist social structures , where market and social rental housing compete and are subject to similar housing regulations. The costs and benefits of renting are more similar to homeownership, and most of the population is entitled to rental housing subsidies. Additionally, the quality of both private and public rental housing is relatively high, blurring the distinction between public housing and the private rental market [94]. Dual rental systems, by contrast, are characterized by a strict separation between the public and private segments of the rental market. This situation is found mostly in countries with liberal welfare systems but also in Belgium, Finland, Italy, and Norway. In this system, the government subsidizes and promotes homeownership, while the public rental segment is smaller than in integrated rental systems. In dual systems, access to social housing is means-tested and often stigmatized, since the renters living in social housing projects tend to be marginalized groups. Correspondingly, it is characterized by lower quality [94]. Since 1990, there has been greater reliance on market mechanisms in the integrated rental markets, but the distinction between these two systems remains pronounced [95]. In addition, countries with corporatist legacies place greater emphasis on housing as a protected and stable dwelling unit [21], rather than on the financial asset value of housing and its role in building household wealth. Hence, housing policies that heavily regulate and subsidize the rental market make purchasing a home less attractive for tenants. Moreover, the German-speaking countries are characterized by a comparatively protected rental market, along with stricter housing finance systems and fewer incentives for purchasing a home, with the exception of the Netherlands [97]. In this context, the "trade-off" hypothesis was developed [22,81,98]. It argues that in countries with poor public welfare provision for the elderly, households are forced to make private provision for old age through homeownership, which is a form of investment. In countries dominated by rental housing, by contrast, housing is more likely to be perceived as a social right. However, recent studies show that the "trade-off" hypothesis is no longer valid in current times. They found no correlation, or even a positive one, between the level of government social expenditures and homeownership rates in WE countries [21,88,99]. These new trends contribute to a greater dependency on IWT when it comes to accessing first-time homeownership. Thus, we hypothesize that if governments regulate the rental market more heavily, the association between IWT and homeownership will be stronger than when rental regulations are less restrictive. We also hypothesize that if governments regulate the rental market more heavily, those who received a higher amount of IWT will have a higher probability of homeownership with and without a mortgage. Finally, we adhere to the same hypothesis with regard to government housing policies oriented toward increasing the share of public housing. The housing literature accounts for other complementary factors that affect the financial dependency of offspring on family resources in accessing homeownership. Variation in housing prices between countries may affect access to homeownership and affordability for young adults as well [66]. In countries with higher housing prices, one would expect young adults to be more dependent on financial support from their parents in accessing homeownership. On the other hand, one must also consider the countries' general level of economic development : in richer countries young adults are more likely to be accepted as mortgage holders because of their greater chances of gaining future income [23]. Therefore, one would expect young adults in richer countries to be less dependent on family financial support. Yet, researchers have observed the trend of re-familialization even in Scandinavian countries, which are characterized by the most generous welfare systems [88]. Thus, we hypothesize that when housing prices are higher , the association between IWT and the probability of mortgaged homeownership will be stronger. We also hypothesize that in this context, those who have received greater IWT will have a higher probability of mortgaged homeownership. --- Data, sample, and variables We drew the data from the three waves of the Household Finance and Consumption Survey , namely 2010, 2013-2014, and 2017, which is conducted by the European Central Bank. This survey has been held every four years since 2010 and includes comprehensive information about household wealth and liabilities. For the purpose of the present study, the unit of analysis is the household, because homeownership and mortgage debt are best viewed as a characteristic of households, rather than of individuals [58,100]. The first wave covered 68,627 households, the second wave 84,829 households, and the third wave 84,611 households. The survey includes information for 16-22 European countries in total . Our sample of analysis consists of 20 countries that have a sufficient number of cases for the variables of interest: Austria, Belgium, Cyprus, Germany, Estonia, Spain, Finland, France, Greece, Hungary, Ireland, Italy, Luxemburg, Latvia, the Netherlands, Poland, Portugal, Slovenia, Slovakia, and Lithuania. Unfortunately, the HFCS does not include more Scandinavian countries, except for Finland. For statistical purposes, the HFCS defined the household representative person on the basis of the UN/Canberra definition. It applies the following criteria in the order listed, until a single appropriate reference person is identified: household type ; the person with the highest income; and finally, the eldest person in the household. We included young adults aged 25-40 in our sample. The common age range used for young adults is 25-34 [36,101], but in view of delays to marriage and family formation inherent to the current generation [38], the age range was extended to 40. The total sample size for the three waves is n = 25,946 households. The analyses in this study are based on the HFCS user guide [102], which specifically addresses the problem of high rates of non-response regarding questions about wealth . The current study found a high rate of missing values for the independent variable . In order to solve this problem, the HFCS suggested multiple imputation techniques for estimating the missing values of non-responding households. This estimation of missing observations is conditional upon observed variables that can plausibly explain the pattern of missing information. The number of imputations provided by the HFCS is five [102], which seems to be the generally agreed number of imputations provided with survey data on household wealth. Further, following the use of multiple imputations, we used The Rao-Wu bootstrap variance estimation method [102,103] following the HFCS instructions, with 1,000 replications. Dependent variable. In order to assess homeownership among young adults, we constructed the categorical variable named housing tenure, combining information on homeownership and all mortgage debt taken by the household . The variable was sorted into three categories: non-homeownership ; mortgaged homeownership; and outright ownership . Independent variables. The main independent variable in the analysis is IWT, which we consider a dummy variable distinguishing between households receiving wealth transfers and non-receiving households. We combined this variable with the following two questions [2]: First, did the household receive an inheritance or substantial gift . Second, did the household inherit its main residences or receive it as a gift. The dummy variable takes the value 1 if either or both answers are yes; otherwise, we assigned it the value of 0. We combined both forms of IWT into a single variable, as our main interest is in the combined effect of IWT with institutional context, in influencing chances of homeownership . We acknowledge that inheritance in the form of gifts or housing assets can also be transferred in a later stage of life and not only at the stage of young adulthood. However, since the HFCS latest wave was launched in 2017, we cannot follow young adults at a later stage. In order to evaluate the amount of IWT provided , we used a cumulative distribution function of IWT for each country, meaning that we grouped the quantitative values of IWT into quintiles for each country. This practice allows us to compare countries with different purchasing power parity . We named this variable IWT quintiles, and it includes only households that have received IWT. Only 14 countries in our sample had a sufficient number of observations on this variable. We also controlled a series of household economic and socio-demographic variables, which were found to be correlated with homeownership [61,104]; the household income variable refers to the gross annual income from all resources . Here again, we generated income quintiles for each country. This relative definition of income makes it possible to compare those in similar class positions across countries with different PPP. Academic education is based on the highest ISCED level attained and grouped into three categories: lower than high school graduation, high school graduation , and academic education. Age is a continuous variable indicating the household representative's age in years. Household size is also a continuous variable indicating the number of individuals in the household . Marital status is a categorical variable with three categories, for which a value of 1 denotes "married/consensual union on a legal basis," a value of 2 denotes "single," and a value of 3 denotes "divorced, separated or widowed"-in the case of young adult households, the percentages in the last category were very low . Employment status is a dummy variable for which 1 denotes "employed household representatives" and 0 denotes "unemployed/not in the labor force" . In order to identify the extent to which institutional and structural factors moderate the relationship between IWT and IWT quintiles and homeownership, we used the following five macro-level variables. In order to match these to the timeline of the HFCS survey waves, we drew data for the macro indicators from 2010-2017 . In order to capture the level of activeness and accessibility/generosity of housing finance institutions, we used two measures that allow between-country comparisons: Total outstanding residential loans-to-GDP ratio reflects the mortgage market's activeness in a given country [105]. Higher residential loans-to-GDP ratios indicate countries where homeownership is mainly achieved through mortgage loans, while lower levels indicate alternative means of attaining homeownership . Max LTV ratio is the second macro variable capturing access to mortgage . It represents the level of generosity of the housing finance system: A higher max LTV ratio means that lower-class households are able to access the mortgage market and reflects the level of liberalization and risk that housing finance institutions are willing to absorb in the event of a default [106]. Although these two variables are similar, the latter relates to mortgage finance conditions, while the former indicates the final mortgage market results . In order to capture governmental housing policies oriented towards increasing the share of renters, we used two indicators. The first is rent control level. This is a quantitative variable that reflects the extent to which the government regulates the initial rent levels and the ongoing rent increase landlords can demand from tenants . Higher levels in this dimension mean higher rent controls imposed by the state; lower levels mean the initial rents and ongoing rents are freely negotiated between landlord and tenant. We also measured the share of public housing stock, by calculating the average share of housing stock from the total number of dwellings in a given country, for two available time points [108]. As a means of accounting for housing affordability, the literature suggests measuring, on the one hand, a purchase-related variable, such as house prices or mortgage loans, and, on the other, a financial capacity indicator, such as household income [109,110]. Accordingly, using the HFCS database, we self-calculated the median mortgage-to-income ratio for each country which makes housing affordability a comparable measurement between countries with different PPP. A higher mortgage-to-income ratio means less affordable housing. We also controlled for country-level affluence using country dummies, GDP per capita [111,112] and generated a dummy variable indicating post-communist countries . The descriptive statistics of the macro indicators are shown in Table 2. --- Findings The finding section is organized accordingly; we first introduce the findings of the descriptive statistics and multivariate analyses to investigate the association between IWT and IWT quintiles and homeownership tenure, within and across countries. In the second part we will add the institutional factors that moderate this association. --- Note. Average residential loan to GDP% for years: 2008-2017 [105]. Average Typical LTV for 2007 [18,113]. Max LTV 2011/2015 [114]. Max LTV 2017 [115]. Max LTV for Luxemburg [114]. Max LTV Spain 2008 https://www.housing-finance-network.org/index.php?id = 348. Rent control level [116]. Average GDP per head of population for years: 2009-2017 [111]. Average GDP per capita for Cyprus [112]. Average Share of public housing stock [108]. https://doi.org/10.1371/journal.pone.0274647.t002 --- Descriptive statistics for housing tenure by IWT and IWT quintiles We calculated a series of descriptive statistics in order to examine how IWT, and the extent of IWT, is associated with homeownership tenure, for each country. Fig 1 shows the rates of housing tenure categories by IWT for each country. Fig 1 reveals a stratified pattern of homeownership categories that are dependent on IWT across countries. In most countries, households benefitting from IWT have higher likelihoods of outright ownership as compared to non-beneficiaries of IWT. In particular, in CEE countries, IWT beneficiaries have higher shares of outright ownership , which is also true of SE countries such as Italy and Greece , as compared to IWT beneficiaries in WE countries, including Finland . The stronger correlation between IWT and outright ownership among CEE and SE countries as compared to WE countries , is also confirmed by the higher Cramer's V values for the former. By contrast, IWT beneficiaries situated in WE countries are more likely to have mortgaged ownership, with at least half of the IWT beneficiaries in those countries having mortgaged homeownership, such as Belgium , Luxemburg , Finland , and Ireland . The high prevalence of renting among German-speaking countries can be explained by state regulations supporting the rental sector as an alternative to homeownership [18]. As for non-IWT recipients, the lack of family financial support pushes them into the rental sector. Yet, among CEE countries, the latter have relatively high share of outright ownership independent of IWT . We are also interested in how different levels of IWT contribute to homeownership, in different institutional context. Ireland), as those in the highest IWT quintiles are more likely to have outright ownership or mortgaged homeownership as opposed to those in the lower IWT quintiles. These stratified patterns are substantially less pronounced among CEE countries, with a large share of those situated in the lower IWT quintiles having outright ownership. The stronger correlation between the extent of IWT and outright ownership or mortgaged homeownership among WE countries compared to the CEE countries, is also confirmed by the higher Cramer's V values for the former. This is an indication that housing assets are more equally distributed among CEE countries and in SE countries to some degree . Third, among WE countries, Spain, and Portugal, households situated in the highest IWT quintiles tend to have mortgaged homeownership rather than outright ownership. This is expected, as the latter countries are characterized by more developed and generous housing finance systems , coupled with unaffordable housing prices, which cause young adults to revert to using the IWT at their disposal by taking up mortgaged loans to purchase housing assets. Thus, among the latter, those endowed with higher-value of IWT are at an advantage when it comes to mortgaged homeownership. Country-specific multivariate analysis. These descriptive statistics already produce interesting findings, but they do not reveal the extent to which IWT contributes to homeownership tenure, independently of other household characteristics, both between and within countries. Since our sample includes 20 countries, we are not able to perform a multilevel analysis to investigate country-level effects with reliable variance estimates [117]. Thus, we pooled cross-sectional data and calculated pooled multinomial logistic regression models to estimate the probability of being in a particular category of housing tenure by IWT, controlling for household economic and socio-demographic attributes, with a set of country-level fixed effects: country #year dummies, GDP per capita, and post-communist countries dummy . In order to facilitate the interpretation of the data, we display in Fig 3 below the average marginal effects for these models. The AME reflect the percentage-point difference in the dependent variable associated with a one-unit change in the independent categorical variable, net of control variables at their observed values [118]. An important advantage of AME is that it can be compared across countries. In all countries, the probability of outright ownership is statistically significant and higher for IWT beneficiaries than for non-beneficiaries, net of control variables. Yet, the gap in outright ownership between these parallel groups is larger among CEE countries, as well as in Greece and Italy , than it is among WE countries . This is because the former countries are characterized by comparatively less developed housing finance institutions and family financial support is a social norm, which in turn strengthens the association between IWT and outright ownership to a greater degree than in other countries. Additionally, in all the countries, the probability of non-homeownership is statistically significant and lower for IWT beneficiaries than for non-beneficiaries, net of control variables. Indeed, the data provides strong evidence that access to homeownership is produced through the accumulation of family resources over generations. We also expected that young adults living in countries characterized by less affordable housing prices will be more dependent on family financial resources; hence, we expected the relationship between IWT and mortgaged homeownership to be stronger in this context. Indeed, we found that IWT beneficiaries have a statistically significant and higher probability of mortgaged homeownership, compared to their peers, and that this association is stronger in WE counties with less affordable housing, holding all other variables constant . By contrast, in CEE countries, we found a statistically significant and negative association between IWT and mortgaged homeownership. In the latter countries, IWT beneficiaries have a lower probability of mortgaged homeownership than non-beneficiaries . This means that those have not benefited from IWT in CEE countries tend to have mortgaged ownership, while IWT beneficiaries tend to have outright ownership. Among SE countries, the association between IWT and mortgaged homeownership is negative and statistically insignificant. We turn now to investigate the association between the extent of IWT and housing tenure, in different institutional contexts. In order to do so, we ran the same equations detailed above, but on IWT quintiles . Fig 4 displays the AME for the pooled multinomial logistic regression, which predicts the difference in probability of being in any of the categories of housing tenure by IWT quintiles, with control variables. Fig 4 shows that the stratified patterns of housing tenure found earlier among Western countries hold, net of control variables. The Fig reveals that across countries, households that are situated in the highest IWT quintiles have a higher probability of outright ownership and a lower probability of non-homeownership than those from the lower IWT quintiles, net of control variables. The Fig also clearly shows a wider IWT class-based gap in housing tenure among WE countries, and in particular among German-speaking countries. Those situated in the highest IWT quintile in Germany and Austria have a 30 and 50 percentage point higher probability of outright ownership and a 36 and 16 percentage point higher probability of mortgaged homeownership than those situated in the lowest IWT quintile. By comparison, in Spain, Portugal, and France, households situated in highest IWT quintile have around a 20 percentage point higher probability of outright ownership, with Belgium and France having a 29 percentage point higher probability of mortgaged homeownership and Ireland having a 26 percentage point gap, as compared to households situated in the lowest IWT quintile. Among CEE countries, IWT class-based gap in outright ownership is also relatively wide, as those from the highest IWT quintile have a 20-28 percentage point higher probability of outright ownership, compared to those situated in the lowest IWT quintile . Yet, among CEE and SE countries, the class-based gap in mortgaged homeownership is considerably narrower, as those from the highest IWT quintile have the same or even a lower probability of mortgaged homeownership than those situated in the lowest IWT quintile. This means that the distribution of housing assets is more equal among young adults of different means in CEE and SE countries. Hence, in this context, households with fewer means have better wealth prospects as they are more likely to hold housing assets through mortgages than their parallel in the lower quintiles among WE countries. --- Introducing country-level indicators Our main research aim is to investigate whether and to what extent economic and political institutions moderate the association between family financial resources and homeownership. First, we expected a "trade-off" between micro-and macro-level institutions: When housing finance institutions are less active and generous , the association between IWT and mortgaged homeownership will be relatively stronger. We hypothesized the same with regard to the extent of IWT. Second, because countries characterized by higher levels of rent control are less oriented towards increasing the share of homeowners, we expect children to be more dependent on family financial resources. Thus, we expected that when governmental regulations support and protect the rental market , the association between IWT and mortgaged homeownership or outright ownership will be relatively stronger than when rental regulations are less pronounced. We hypothesized the same with regard to the extent of IWT provided in this context. Third, we hypothesized that when housing assets are less affordable the association between IWT and mortgaged homeownership will be relatively stronger than when housing assets are more affordable. We hypothesized the same with regard to the association between the extent of IWT provided and mortgaged homeownership. In order to test these hypotheses, we introduced country-level indicators and their interaction terms with IWT to pooled multinomial logistic regression equations, in order to estimate the extent to which these country characteristics moderate the relationship between IWT and housing tenure. Because models with many cross-level interactions tend to become over-fitted and not estimable, we proceeded step-by-step and only integrated a single interaction at a time into the models. Subsequently, each regression equation predicts housing tenure as a function of all household characteristics , plus only one country-level characteristic at a time, with the set of country-level fixed effect: survey year, GDP per capita, and post-communist countries dummy. In the following models, all macro variables were centered around the mean. First, we created an empty model including country dummies only and showed that the intra-class correlation is 0.11, which means that 11% of the variation in housing tenure is explained by the country of residence. We then created the first model, introduced in S3 Table, which included IWT, with residential loan-to-GDP ratio and a cross-level interaction between residential loan-to-GDP ratio and IWT, the set of household socio-demographic characteristics, and the set of country-level fixed effects . For models 2-5, we ran the same equation, with a different macro-level variable each time. In order to simplify the interpretation of results and because our main research interest is to predict homeownership by cross-level interaction between IWT and different macro-level variables, we present the findings for Models 1-5 in Fig 5A -5E. The Figs display the predictive margins of the pooled multinomial logistic regression models, which predict the probability of housing tenure by IWT and country-level variables. In the Figs, the solid line represents IWT beneficiaries, while the dashed line represents IWT non-beneficiaries. When we zoom out to examine all the Figs, we observe a significant main effect for IWT in predicting the probability of outright ownership, but not necessarily of mortgaged homeownership. Thus, overall, IWT beneficiaries have a higher probability of outright ownership, as compared to non-beneficiaries. We continue with Fig 5A and5B, which capture the role of housing finance systems in moderating the association between IWT and housing tenure. Both sides of Fig 5A display a statistically insignificant interaction between residential loan-to-GDP and IWT, when it comes to predicting housing tenure categories. Fig 5B, however, reveals a statistically significant, negative interaction between max LTV and IWT, as IWT beneficiaries have higher probability of mortgaged homeownership on the lower levels of max LTV ratio than non-beneficiaries . By contrast, non-beneficiaries of IWT have a higher probability of mortgaged homeownership on the higher levels of max LTV ratio . This finding confirms our hypothesis regarding the trade-off between IWT and housing finance systems. This means that when housing finance systems are conservative , those receiving family financial support have higher probability of mortgaged homeownership than those who do not. It also shows that when housing finance systems are more generous, the role of family resources makes a somewhat weaker contribution to mortgaged homeownership. Next, we examine the role of governmental regulations in the housing market in moderating the association between IWT and housing tenure, in Fig 5C and5D. Both sides of Fig 5C show an insignificant association between the share of public housing stock and the probability of mortgaged homeownership or outright ownership. However, the left-hand panel in Fig 5D reveals a statistically significant, negative interaction between IWT and rent control level for the probability of mortgaged homeownership. While the probability of mortgaged homeownership for IWT beneficiaries increases somewhat across the levels of rent control, the probability of mortgaged homeownership for non-beneficiaries decreases as the level of rent control increases . The right-hand side of Fig 5D also reveals a significant interaction effect between IWT and rent control level, with an advantage for IWT beneficiaries in predicting the probability of outright ownership across all rent control levels. Yet, the gap between the two groups narrows as the level of rent control increases. These findings are partially in line with our hypothesis, since in the context of a highly controlled rental market, IWT beneficiaries hold an advantage in mortgaged homeownership and outright ownership over non-beneficiaries. Yet, we have not found any evidence for this when the share of public housing is introduced into the model. We were also interested in the way in which housing affordability interacts with IWT for predicting housing tenure . The left-hand side of Fig 5E reveals a statistically significant negative interaction between mortgage-to-income ratio and IWT when predicting mortgaged homeownership. Thus, in line with our expectations, IWT beneficiaries have higher probability of mortgaged homeownership on the higher levels of mortgage-to-income ratio, as compared to non-beneficiaries. Yet, the gap between those two groups is relatively small across the units of mortgage-to-income ratio. Thus, the findings support our hypothesis regarding the stronger dependency of offspring on family financial support when purchasing a home, in the context of less affordable housing prices . Our second research aim was to investigate whether and to what extent the value of IWT received influences access to homeownership among offspring, while taking institutional factors into account. Thus, we subsequently ran the same equations described above, but this time with IWT quintiles. Once again, all macro variables were centered around the mean. Fig 6A -6E below presents the predictive margins of the pooled multinomial logistic regression models predicting the probability of housing tenure by IWT quintiles and country-level variables . The Figures in the first row capture the role of housing finance systems in moderating the association between IWT quintiles and housing tenure. We expected that when housing finance institutions are less active or less generous, the association of IWT quintiles and mortgaged homeownership will be stronger. Fig 6A reveals a statistically significant, negative cross-level interaction between IWT quintiles and residential loan to GDP% for predicting the probability of mortgaged homeownership. Surprisingly, the middle class has the highest probability of mortgaged homeownership at the lower levels of residential loan to GDP% and the lowest probability at the highest levels of residential loan to GDP%. In contrast, the highest quintile has the highest probability of mortgaged homeownership on the higher levels of residential loan to GDP%, compared to the third IWT quintile . The right side of Fig 6A shows a significant, negative interaction effect between IWT and residential loan to GDP% when it comes to predicting the probability of outright ownership. The gap between the IWT quintiles increases at the higher levels of residential loan to GDP%: For the highest IWT quintile , the probability of outright ownership is 33 percentage points higher than for the lowest IWT quintile, at the highest level of residential loan to GDP%. Fig 6B exposes statistically significant and positive interaction between IWT quintiles and max LTV ratio in predicting the probability of mortgaged homeownership. Again, at the higher levels of max LTV ratio, the probability of mortgaged homeownership is the highest for the fifth and fourth IWT quintiles , as compared to the lowest IWT quintile. Hence, contrary to our expectations, the upper IWT quintiles actually hold an advantage in mortgaged homeownership when housing finance institutions are more active and more generous. The Figs in the second row capture how governmental practices in the housing market moderate the association between IWT quintiles and housing tenure. We expected that when the rental market is more highly regulated, the association between IWT and mortgaged homeownership or outright ownership will be stronger. The findings presented in Fig 6C and6D on the whole confirm our expectations. The left-hand side of Fig 6C shows a significant negative interaction effect between IWT quintiles and public housing stock% for the probability of mortgaged homeownership. At the lower levels of public housing stock%, the gap between IWT quintiles is relatively narrow, increasing at the higher levels of public housing stock%. For example, the highest IWT quintile probability of having mortgaged homeownership is 8 percentage points higher than the lowest IWT quintile, at the highest levels of public housing stock%. The right-hand side of Fig 6C shows the advantage of the highest IWT quintiles, compared to the lowest IWT quintile, on the higher levels of public housing stock% as well . In line with these findings, both sides of Fig 6D reveal a significant, negative interaction effect between IWT quintiles and rent control levels. Thus, we once again observe an advantage for the highest IWT quintiles at the higher levels of rent controls as compared to the lowest IWT quintile, for predicting mortgaged homeownership or outright ownership. Hence, the results mostly support our hypothesis that when the rental market is highly regulated , recipients of greater IWT have a higher probability of mortgaged homeownership or outright ownership. We were also concerned with the way in which the extent of housing affordability moderates the association between IWT quintiles and mortgaged homeownership. We expected that recipients of greater IWT will be more likely to have mortgaged homeownership when housing prices are less affordable . The left-hand side of Fig 6E does indeed support our hypothesis, since the gap between the highest and lowest IWT quintiles in the predicted probability of mortgaged homeownership is 14 percentage points higher, at the higher levels of mortgage-to-income ratio. We will now proceed to a detailed discussion and conclusions of the findings in the next section. --- Discussion and conclusion In this study, we contribute to the sociological literature on homeownership and wealth inequality by shifting the focus towards macro-level institutional explanations originating in housing studies, which suggest how these inequalities can be mitigated. We show how the dynamic between macro-level institutions and family materialistic resources contributes to inequality in access to first-time homeownership for young European adults at the current time. In doing so, we hope to have broadened the sociological literature and debate about homeownership and wealth inequalities to account for theoretical explanations centered around variation in housing finance systems and for the contribution of government programs to homeownership inequality and thereby to wealth inequality within and between countries . We believe that this alternative framework provides broader, updated, and more relevant theoretical explanations than previous frameworks about individual circumstance of accumulative advantage [5,10,63] or other macro-level explanations of homeownership inequality focusing on welfare state retreat, labor market instability, and growing income inequality [28][29][30]. Our key findings have several implications that cut across socioeconomic, spatial, and demographical arenas. First, our findings display the different structural conditions that shape the wealth stratification process through homeownership for the current cohort of young adults' cohort within and across countries. They reveal how homeownership inequality increases and decreases within and between countries depending on the extent of mortgage market liberalization and governmental housing policies, together with family financial support. The interaction between these mechanisms contributes to hierarchical patterns of homeownership among young adults in WE countries and to a more equalized distribution of housing asset ownership among SE and CEE countries. Paradoxically, we found that when housing finance systems are more liberal , those receiving the highest amount of family financial support have a higher probability of mortgaged homeownership than those receiving lower amounts of family financial support. This counterintuitive finding is surprising, since one would assume that a more liberal mortgage market would reduce the advantages of the wealthiest in mortgaged homeownership. We offer two main explanations for it: First, countries with a more accessible mortgage market are usually also characterized by less affordable housing prices for the median-income household . This in turn makes young-adult households more dependent on their family financial resources [43,80], which provides an advantage for the wealthier in mortgage homeownership. Second, in those countries young adults may revert to family financial assistance in order to invest in housing assets in higher socioeconomic locations that will appreciate faster [83]. Therefore, liberal mortgage markets actually serve to enable wealthier young adults to reproduce and preserve their parental wealth status, just as they serve to widen wealth inequality between the older cohort and the present cohort of young adults [43]. From the latter finding, we can also learn about how residential segregation is developed in space. As housing cost inflation has been increasing substantially in most European countries in the last decade, with the COVID-19 pandemic fueling this development even further [119], combined with muted income growth, young adults are being segregated in the built environment, according to the means available to them from their own family and the mortgage market. Those receiving higher support purchase housing assets in higher socioeconomic areas that also provide higher quality of education and health services. The access of wealthier young adults to homeownership increases housing price inflation even more, thus "locking out" those who are less wealthy from access to the housing market as well. In this sense, the pursuit of wealth accumulation advances familistic solidarity over social solidarity. By contrast, when housing finance systems are more conservative, IWT gaps in homeownership still exist but to a much lower degree. We do not imply that conservative mortgage markets are a better alternative than liberal ones, but we do emphasize the need for alternative government housing programs in the rental and the housing market sectors to increase housing affordability among the young. The best example for this is the Netherlands, which is characterized by the most accessible mortgage market together with a highly controlled rental market, which reduces wealth inequality and wealth concentration to some degree. Our research findings also hold demographical implications for the present cohort of young adults, specifically for those who cannot rely on family financial resources or receive them to a lesser extent. Since the transition to first-time homeownership for young adults is usually coupled with marriage and family expansion, housing unaffordability also means a delay in the transition to first-time homeownership and in family formation, which can also translate to decreasing fertility rates at the national level [34]. While this study does make some novel contributions, it also has several limitations. It was not possible to follow the subjects over time, since no dataset is available on the existence and extent of IWT over time for the same households in different countries. Such information would provide further insight into the accumulation of wealth over individuals' life cycles in different contexts. Future research would benefit from a larger sample of countries to examine how institutional factors moderate the association between IWT and housing tenure by means of multilevel models. In addition, since the HFCS survey does not collect data on NE countries , they are not represented in this study. Lastly, as the sociological literature about wealth inequality continues to expand, the problem of housing unaffordability across young adults in differential social settings has to be more seriously confronted theoretically, empirically, and from a social policy perspective. Tackling the problem of housing unaffordability among young adults from the roots will require more sociological studies about the institutions that shape homeownership inequality in an area of intensified mortgage and housing financialization as well as increasing intra-and intergenerational wealth inequality. --- Data cannot be shared publicly because of discloser. Data are available from the European Central Bank: Institutional Data Access for researchers who meet the criteria for access to confidential data. --- Supporting information S1 --- S2 Table. --- S3 Table. --- S4 Table. ---
The literature on social and wealth inequality has long acknowledged the importance of intergenerational wealth transmission (IWT) to inequality in homeownership tenure. However, it has paid insufficient attention to the institutional structures that moderate these inequalities. Therefore, in this study, we ask how institutional factors via differential housing finance systems and governmental housing policies, moderate the association between IWT and homeownership tenure. This is done by using the framework of housing regime configurations and mortgage market financialization. To do so, we pooled data for 20 European countries from the European Central Bank's Household Finance and Consumption Survey (HFCS) for 2010-2017, for household heads aged 25-40. Our main findings show consistent contradiction to the welfare state-homeownership "trade-off" hypothesis: that is, when the rental market is more heavily regulated, it is actually young adults who benefited from IWT or who received higher value of IWT have a higher probability of mortgaged homeownership. Paradoxically, when housing finance institutions are more active and generous, the wealthiest young adults hold an advantage in mortgaged homeownership. Therefore, liberal mortgage markets actually serve to enable wealthier young adults to reproduce and preserve their parental wealth status. Further, when housing prices are less affordable (median mortgage-to-income ratio), those who have received a higher amount of IWT hold an advantage in mortgaged homeownership. We discuss the implications of our findings, which cut across the socioeconomic, spatial, and demographical arenas.
Introduction The aging demographic is exploding. Globally, the number of people aged 60 and over will triple from 605 million in 2000 to 2 billion in 2050 [1]. The number of older Americans, aged 65 and over will double from 2000 to 2040 and, by 2040, older adults will comprise 21% of the U.S. population [2]. This aging explosion presents challenges to society, governments, and families; however the greatest challenge will be for the older adult who must adapt to changes in physical functioning, the struggle to control chronic illnesses, and perhaps face the daunting challenge of a relocation and transition to a less independent living arrangement. Defined by Meleis [3] transition is a change or move from one place to another or from one condition or state to another, transition affects older individuals in many ways. In particular, relocation is a common transition for older adults and can be initiated by a change in health status, death of a spouse, decrease in financial resources, or the desire to be near family. For people of any age, these changes are not only stressful and anxiety-ridden, but also a move to a different environment creates disequilibrium and chaos for an older adult when compared to younger counterparts [4][5][6][7]. However, many older adults are relocating to a more supportive living environment for multiple reasons, yet how they are able to achieve a positive transition into supervised housing is the focus of this integrative review. It will summarize, synthesize, and appraise research findings about older adults relocating from independent living to supervised housing using the Theory of Planned Behavior [8,9]. The aims that will be addressed in this review are: to determine the behavioral beliefs of older adults who are relocating from independent living to supervised housing; to determine the older adult's level of perceived control of the relocation; and to determine the influence of subjective norms on the older adult's relocation. --- Background The U.S. Census Bureau reported that, from 2005 to 2010, 15.2% of adults age 65-74 and 11.9% of adults age 75 and older relocated [10] and moved within the same county of residence [10]. In 2013, 85% of adults aged 65 and older lived independently, some with spouses and some alone. That same year, 2.7% of older adults resided in senior housing and required assistance with at least one activity of daily living [2]. It is noted that the percentage of older Americans who enter a facility with 24-h supervision increases with advancing age [2]. Relocation is often a necessary process that older adults and their families often face as functional and cognitive declines necessitate environmental adaptations. Older adults who live alone or with family often lack adaptive amenities to compensate for functional declines while older adults living in communities designed for seniors were able to "age in place" for longer periods of time due to structural adaptations such as wheelchair access and safety bars [11,12]. Older adults are often compelled to move closer to adult children caregivers as the health of self or spouse deteriorates or merge into multigenerational households as do many African-American elders [13,14]. Therefore, the purpose of this integrative review is to determine the factors that facilitate positive transitions for older adults relocating from independent living to supervised housing. Relocation has many implications for health care workers and families. Tang and Pickard [15] used secondary data from a previous study of community dwelling older adults and found that, the more services the respondents used , the higher the perceived need to relocate to a higher level of care [15]. Vulnerable older adults were not as adept in acknowledging the need for services or relocation as their functional status declined. Many independent older adults believe they will need to move in the future; however, their awareness and utilization of community services may be suboptimal [15]. Many relocation issues may be mitigated by improving awareness of available in-home or community-based services, such as adult day centers [5,15]. For many older adults and their families, the solution to increasing care needs is a relocation to senior housing. There are many iterations of supportive housing such as, assisted living, senior apartments, continuing care retirement communities, and naturally occurring retirement communities. Most all of these options provide security and maintenance free living, however, not all provide 24 h nursing supervision. Assisted living facilities are regulated by each state and as such, have widely variable staffing requirements and services but do provide room and board, assistance with activities of daily living, activities, and basic nursing care [16]. Currently, 735,000 older adults reside in assisted living facilities where the average length of stay is 22 months [17]. Bekhet, et al. [18] interviewed older adults who had relocated to senior housing . The results revealed multiple reasons for seeking a more supportive living environment. "Pushing" factors toward a relocation were declining function, shedding home ownership responsibilities, lack of assistance, loneliness, and moving closer to family. "Pulling" factors reflected the older adults' need for secure housing, reconnecting with friends, and familiarity with the senior living community. Some of the data revealed "overlapping" factors which were a combination of the "pushing" factors and the "pulling" factors . These findings have been substantiated in other research [7,19,20]. An acute care hospital stay and subsequent rehabilitation can significantly diminish the older adult's functional status requiring a change in living arrangements [21]. Risk factors for relocation following a hospitalization are old age, being female, poverty, health problems, poor health behaviors, limited physical function, decreased hearing and/or visual acuity, and inadequate social support [22]. Older adults who reside by themselves, are located in a rural community, rent an apartment or house, and who cannot access support services may face relocation to a higher level of care after a hospital discharge [4,22]. For older couples, the reasons for relocation may include some of the issues previously mentioned but the timing of the move may be determined by the increasing frailty or declining health of one [18] spouse [5,23]. Additionally, lack of consistent, reliable caregiving help in the home, both formal and/or informal, often prompts a move to a different living situation [5]. --- Theoretical Framework and Definitions The Theory of Planned Behavior is an expansion of the Theory of Reasoned Action . The assumption of TRA is that intention to adopt a behavior is influenced by attitudes about performing the behavior and the value that important others place on the behavior [8]. Behavioral beliefs are the perceptions that an individual develops concerning a specific behavior and are the antecedent to either positive or negative attitudes about that behavior while subjective norms are the opinions and beliefs that are communicated from others and the incentive to adopt those opinions about the behavior [24]. Perceived behavioral control was added to TRA to allow for the assumption that behavior is volitionally controlled and as such, is impacted by external factors that help or hinder performance of the behavior [24]. The following operational definitions were developed to simplify and standardize terms in this review. Independent living is defined as older adults living alone in their own home or apartment with minimal assistance from paid and/or unpaid caregivers while supervised housing is defined as older adults living in a congregate environment with 24-h supervision. Supervised housing is also described in the literature as congregate housing, assisted living, care homes, nursing homes, long term care, sheltered housing, and residential care [6,14,[25][26][27]. Additionally, theoretical definitions are used to explicate the application of Theory of Planned Behavior concepts [8,24]. Behavioral beliefs are defined as the beliefs, perceptions, and experiences that the older adult considers when contemplating a move to a more supervised care environment. These beliefs entail reasons for the relocation, the impending move, and the decision-making process. Perceived control describes the level of perceived control the older adult has in decisions related to relocation. Perceived control manifests through the choices pertaining to relocation, reasons for relocation, and adjustment to a new living environment. Finally, subjective norms are the influence and opinions of referents on the relocation decision and transition to supervised housing. The Theory of Planned Behavior has been widely used to understand behavioral intention to perform health behaviors and can be applied to both quantitative and qualitative inquiry [9,28]. Behavioral and control beliefs in addition to subjective norms, are identified through focus groups or interviews and enable the development of measurement instruments to quantify the beliefs most likely to encourage the health behavior of interest [28]. --- Experimental Section --- Design Articles were retrieved and assessed using a review style developed by Hawker, Payne, Kerr, Hardey, and Powell [29] . This style has been utilized to evaluate qualitative and quantitative studies for systematic or integrative reviews [30]. The Hawker, et al. [29] method, also known as mixed research synthesis, allows for inclusion of research that measures concepts not well documented in traditional, clinically-based reviews [31]. Hawker et al. [29] advocates using a three-stage method for examining retrieved articles: Stage 1assess for relevance; Stage 2 for data extraction; and Stage 3-grade for methodological rigor. Stage 1 involves reviewing the articles resulting from the literature search. Articles are either accepted or rejected. Criteria for acceptance included applicability to the research question, appropriateness of the study particulars , origination of the data , and study methodology [29]. Stage 2 consisted of extrapolation of key data points about the studies to include design, sample, setting, research aim/hypotheses/questions, method and analysis, results, and conclusions. This step allows the reviewer to organize the major points of each study and further correlate the article with the review aims. Stage 3 entails evaluation of the articles using a four-category scoring mechanism based on specific criteria for components of the study. Ratings ranged from 1 to 4 and included the following study sections: abstract/title, introduction/aims, method/data, sampling, data analysis, ethics/bias, results, transferability/generalizability, implications/usefulness [29]. --- Method/Inclusion/Exclusion Criteria Database searches were conducted using relocation, transition, older adults, and elderly as key words in the title and/or abstract of the manuscript. CINAHL, PubMED, and PsychInfo databases were searched for the years 1992 through 2014, with a return of 907 manuscripts. The search period was determined by the historical development and expansion of assisted living facilities in the United States [32]. Excluded from this review were dissertations, non-research based articles, books, and manuscripts that focused on physiological or biological transitions. Articles focusing on the relocation of older adults with dementia were excluded due to the variation in the cognitive abilities of these individuals that impact decision-making capabilities. Once duplicates were removed and relevance assured, a total of 39 articles were reviewed for inclusion. Articles were reassessed for relevance of research on relocation transitions. Specifically, articles were included that addressed the following issues: behavioral beliefs about relocating to a higher level of care, perceived control over the decisional process, and the effect of the opinions of others . Reference lists were hand searched for those articles frequently cited in retained publications. --- Synthesis of the Literature Sixteen articles were retained for this review: Twelve were qualitative studies, three were mixed methods, and one was a quantitative design. Categories from Hawker [29] are used to organize the findings. . Abstract/Title. All abstracts contained complete yet concise information about the research, and all titles reflected the content contained in the publication. Introduction/Aims. All articles except Fraher and Coffey [5] clearly provided an introduction to the problem and addressed the specific aims of the reported research. Method/Data. All studies except Walker, Curry and Hogstel [23] used an appropriate methodology and data collection techniques. Walker's examination of various dimensions of the relocation process might have been strengthened by using both quantitative and qualitative methodology to support the research aims. Sampling. All articles had age-appropriate sampling from environments that addressed the transition experience. Most studies used convenience, opportunistic, or purposive sampling. One mixed methods study [33] used a random sample of participants from a larger study. Data analysis. Descriptions of data analysis were clear and understandable in all but three studies [5,34,35]. Wilson [34] and Armer [35] used a plethora of instruments and reported psychometric properties for all; however, no description of the statistical analysis performed on the results from the instruments was presented. Fraher and Coffey [5] did not describe their method for data analysis in their qualitative study. Wilson [34] discussed data analysis, but utilization of respondent verification of themes or triangulation was not included. Ethics/Bias. Most reviewed studies reported institutional/university review board approvals, and some also reported approvals from facilities in which the studies were conducted. The majority of articles, qualitative in design, did not thoroughly address human subject protections or privacy issues. For example, Armer [35], Lee [36,37] and Leggett, et al. [38] did not describe the venues in which their interviews occurred, nor did they discuss how privacy was maintained for the participant. Johnson, et al. [39] did not report any human subject protections. Results. Findings for all studies but Armer [35] clearly describe the outcomes with adequate supportive data and logical progression. Armer's results section is very brief, lacks depth, and is primarily dominated by descriptive statistics and qualitative results. This brevity was surprising, especially considering the number of quantitative instruments described and utilized. Transferability/generalizability. All studies report enough information for replication for further research. Since the majority of studies are qualitative, generalizability is not possible. However, reports of this research seek to describe behaviors, attitudes, and perceptions rather than quantify the process of transition experiences. Implications/Usefulness. All studies offer suggestions for further research and processes for assisting older adults through a transition experience. Saunders and Heliker [19] advocate the establishment of an interdisciplinary team to assist new residents, families, and staff during the relocation transition process. Wilson [34] suggests a resident volunteer who would orient the older adult to his or her new home. Using Hawker's [29] process for examining the strength of the selected articles, six studies emerged that were inclusive of all the measurement criteria [18,19,27,33,40,41]. The abstracts and introductions impart to the reader a thorough synopsis of the study and a summary of supportive literature on the selected topic. The articles provide rich, detailed reporting of their methodology, sampling, data analysis, ethics, results, transferability, and implications. While the remaining articles [5,23,[34][35][36][37][38][39] add to the general knowledge of relocation transition in older adults, a more comprehensive description of the introduction, method, data analysis, ethics, and results would have supplied the reader with an enhanced understanding of this important research. --- Results --- Synthesis Summary This section will summarize the results of the integrative review using the Theory of Planned Behavior concepts: behavioral beliefs, perceived control, and subjective norms. Articles were grouped into themed categories and explanations of how the definitions were addressed are included. . Behavioral beliefs are thoughts, perceptions, and idealizations of future actions or activities. For the older adult, perceptions about relocating to a supervised housing can influence the behaviors necessary to attain positive outcomes. In this research review, those attitudes can be classified into five categories: perceptions of relocation, reasons for relocation, adjusting to relocation, decision-making, and "wild card". Qualitative studies dominate the evaluation of older adults' perceptions of relocation from independent living to supervised housing. Lee [37] interviewed independently-living elderly Chinese about their beliefs on residential care homes. Perceptions were mostly negative and described long term care as "a dumping ground" and "a place to die" [37]. The quality of care in congregate housing was also a concern for these older adults who felt that attentiveness of staff might not be adequate. Shippee's [40] participants, who resided in a continuing care retirement community, viewed a move to a higher level of care as a disintegration of their established role as a healthy older adult, thereby disrupting friendships and social networks. Some older adults viewed relocation as a positive endeavor describing familiarity with the facility, social connections with current residents, closer proximity to adult children or other relatives, and, for those living alone, a means of combating loneliness [5,18,[35][36][37][38][39]. Reasons for relocating to a higher level of care included physical and functional issues and psychosocial factors. The most common motivations were declines of the older adult's or a spouse's health and function [5,18,20,23,27,[37][38][39]. Relinquishing home ownership and responsibilities, especially housekeeping duties for women, was another factor in relocating [18,36,38]. Inconsistencies in family support and in-home assistance, as well as unwillingness to move in with family, were additional reasons for older adults to relocate [18,[37][38][39]. Interviews with African-American and European-American older adults revealed that indigent elderly may not be aware of or able to afford community-based care. Therefore, they had to move to a higher level of care sooner than their wealthier counterparts [33]. Several studies reported that fear of becoming a burden to families was a motivator for older adults who proactively relocated to a higher level of care [19,27,38]. Adjusting to a new living environment was reported in multiple studies and highlighted the differences in the belief systems held by older adults to navigate a new living situation. Some new residents experienced fear, anxiety, despondency, frustration, helplessness, anger, and stress [5,19,27,34,36,38]. These feelings subsided over time, but for those in whom the move was precipitous and unplanned, the adjustment period was longer [19,27,34]. However, an equal number of responses described relief of household duties, meeting new friends, improved safety, and increased socialization in addition to having continuous nursing supervision as benefits of relocating [5,19,27,34,36]. Decision-making throughout the relocation process involved the choice of when and where to move and also the loss of freedom to make decisions in a congregate living situation. Relocation decisions were usually made by the older adult, sometimes independently and sometimes with the assistance of family or health care providers [5,19,23,27,33,39]. In one study, residents of a continuing care retirement community expressed dismay that the decision to transition to a higher level of care would be made by a committee after evaluation of the older adult's functional abilities [40]. Autonomy was challenged by the rules, regulations, and absence of privacy at the new facility, lack of communication from staff, family and health care providers, and disruption of the older adult's usual routines [5,34,36,37,40]. One study, "wild card", defied classification within the parameters of the beliefs of older adults toward relocation. Walker, Curry and Hogstel [23] attempted to validate the physical and emotional toll experienced by elders transitioning from independent living to a supervised living situation. All the participants in this study expressed steadfastness and strength in the belief that moving was the best option for them and their families; this is not consistent with findings in the other studies. Perceived control or the amount and quality of control the older adult has in the relocation decision-making process is directly related to positive outcomes and adjustment to a new living environment. The articles assessed for this section were classified into three categories: reasons for relocation, decision-making, and adjustment to relocation. Older adults cited their own or a partner's health and safety issues as the primary reason to relocate to supervised housing, and a decision they made either independently or with assistance from family or health care providers [5,[18][19][20]23,33,34,38,39]. Other factors that contributed to a move were the desire to be closer to adult children, the desire for socialization, and elimination of household responsibilities. When the impetus to move was proactive or before an emergent event, older adults had more latitude in the decision-making process [18,20,23,39]. Armer [35] found that when a choice in relocation decision-making was perceived, the older adult experienced more positive outcomes during the transition. This finding was supported by Bekhet, et al. [41], Leggett, Davies, Hiskey and Erskine [38], and Walker and McNamara [20]. In contrast, elders who were unable or not allowed to have input into relocation decisions experienced prolonged adjustment periods, dissatisfaction with the facility and staff, and hesitancy to participate in the social activities of the community [27,33,34,40]. Participants in a continuing care retirement community who were assessed for self-care abilities by staff resented that they had no control over when the move would be deemed imminent [40]. Wilson [34] found that the majority of unplanned moves were a consequence of escalating functional decline and acute care hospitalization, resulting in a lack of decisional participation in relocating and a prolonged period of grief, anger, and regret. Adjustment to relocation was a recurrent theme, particularly with loss of privacy, rules and regulations, and as well as coping with the loss of independence [19,27,[34][35][36]. At the same time, some older adults expressed a renewed sense of safety, consistent care, and increased social interactions as a positive outcome to relocation [5,14,19,20,27,36]. Bekhet, Fouad and Zauszniewski [41] found that adjustment to relocation occurred more quickly if the older adult had participated in the decision to relocate. This finding was supported by Armer [35] and Leggett, Davies, Hiskey and Erskine [38]. V. Lee et al. interviewed older British adults and found that adjustment to relocation was not "time bound" but fluid and comprised of "plots" reflecting "control", "power", "identity", and "uncertainty" [14]. Chinese elders' acclimation to congregate living was mediated by cultural influences which enabled them to assume a new way of life and become one with their environment [36]. Subjective norms are the influences of "others" in changing perceptions and actions of behavioral change. Also termed "referents", the approval, assistance, and guidance of these individuals was instrumental in assisting the older adult in the transition to supervised housing. Family members were most often reported as assisting the older adult in the decision to relocate [5,35,[38][39][40]. This varied from adult children, to extended family, or spouses. Health care providers, including nurses, social workers, and physicians, provided either support for the older adult's decision to move or influenced them to pursue a higher level of care must be attained [27,33,39]. Relationship of the caregiver to the older adult was only revealed in qualitative narrative excerpts, limiting the ability to discern the type of caregiving affiliation. To understand the reasons why elders move to To identify extent of older adults' participation in relocation decision making and extent of SOC --- Discussion Supporting the Theory of Planned Behavior, behavioral beliefs and perceived control are well-documented in the articles reviewed. Studies reflect the duality of the older persons' beliefs and perceptions of control over their destiny. For some, transition into a new living environment was welcomed because it decreased the burden of home ownership, provided a safer and more secure living situation, and afforded continuous supervision and nursing care. Other older adults, especially those whose relocation was forced or unexpected, suffered from emotional distress, loss of self-worth, and inability to integrate into the new community. For them, the move did not provide the same level of acceptance or positive outcomes. The majority of participants, whether willing or unwilling movers, experienced some amount of sadness and grief over the loss of independence, but most were eventually able to accept their physical declines and increased care needs. An interesting finding indicated that some older adults had difficulty "looking" at their own futures embodied by fellow residents who were more infirm and needy [5,27,36,40]. This realization occurred sometime after admission and limited socialization and participation in activities. Manifestations of both positive and negative transitions to a higher level of care are described in these studies and reflect an increased awareness of the power and magnitude of behavioral beliefs and perceived control on positive transitional experiences. Those who assist the older adult in the relocation decision process are viewed in the studies as one entity. Some of the qualitative narrative identifies a specific relationship or profession but most referents are termed "family". Although the literature presented here heralds and supports the role of family, the term is a misnomer. Family caregivers can be family, friends, partners, and neighbors, but the most common caregiver is a 52 year old female caring for her widowed mother [42]. Filial caregivers are the adult children of older adults who assume the caregiver role for one or more parents while caring for dependent children and maintaining full time employment. Sandberg, et al. [43] examined the role of the adult child in the transition of one parent to a higher level of care while still supporting the "healthier" parent. The degree of involvement of the adult child was determined by the needs of the remaining parent. The adult child influenced the decision to move the sicker parent and remained an active participant in caregiving for both parents. Additionally, the adult child assumed the burden of guilt associated with the placement decision. After relocation, the adult child's caregiving role is revised to incorporate maintaining contact with life outside the care facility and monitoring care received by paid staff [44]. Future research should explore the role of the family caregiver by clearly defining the relationship to the older adult and the depth of their involvement in the caregiving and relocation processes. Another area of research should focus on how the Baby Boomers are planning for their long term care needs, many of whom are caring for aging parents. Robison, et al. [45] surveyed randomly selected Baby Boomers to determine their engagement in long-term care planning. Although 60.1% of the respondents felt they would require assistance as they aged, 77.4% of Baby Boomers had no plans for financing future care needs or did not know how they would pay for care as they aged [45]. This is particularly disturbing in that this cohort will significantly swell the aging population and tax an already fragile system of social supports for older adults. --- Limitations This review was time-limited to literature published from 1992 to 2014. Other publications released prior to 1992 may have provided a different historical perspective on relocation of older adults as they would focus on a different generational cohort. Additionally, studies that involved the relocation of older adults with dementia were excluded. While this phenomenon is widely researched, it would be difficult to fully explicate the impact of perceived control, behavioral beliefs, or subjective norms in older adults whose communication and recall may be impaired. Some of the studies were multi-cultural ; however, only one addressed the issue of relocation experiences for low-income older adults [33]. --- Conclusions The majority of studies for this integrative review are qualitative, and the few that are quantitative used a multitude of instruments to determine the elements of a relocation transition for older adults. It is interesting that all of the studies essentially arrive at the same conclusion: Positive relocation transitions are based on the older adults' belief that a move is necessary and that there must be some level of choice and control over the decisions made prior to the relocation. This finding reflects the tenets of the Theory of Planned Behavior in that older adults believe they will need to relocate and when possible, should have control over the decisions surrounding a relocation. While some older adults make these decisions independently, many rely on others to assist in the process of making a move. How then, do health care professionals facilitate these two vital components so that older adults can transition to supervised care with minimal emotional turmoil? The answers, gleaned from the research evaluated here, are to explore the older adult's preferences for supervised housing and to encourage proactive decision-making about alternate housing options. Open, consistent, and honest conversations with older adults and their families are essential to avoid the poor outcomes that result from an emergent relocation. Other avenues of research should focus on methods to mitigate or alleviate the major issues expressed by the participants, such as lack of privacy, inflexible rules and regulations, and suppression of autonomy. --- --- Conflicts of Interest The authors declare no conflict of interest.
The purpose of this mixed research integrative review is to determine factors that influence relocation transitions for older adults who are considering a move from independent living to supervised housing, such as assisted living, using the Theory of Planned Behavior as a conceptual guide. PubMED, CINAHL, and PsychInfo databases were queried using key words: relocation, transition, older adults, and, elderly and time limited from 1992 to 2014. Sixteen articles were retained for review. The majority of articles, qualitative in design, reveal that older adults who comprehend the need to move and participate in the decision-making process of a relocation adjust to new living environments with fewer negative outcomes than older adults who experience a forced relocation. The few quantitative articles examined the elements of impending relocation using a variety of instruments but support the necessity for older adults to recognize the possibility of a future move and contribute to the relocation process. Additionally, the influence of family, friends, and health care providers provides the older adult with support and guidance throughout the process.
Introduction In Europe today, we are witnessing an ageing population with an increasing trend for the coming years, which is associated with a growth in long-term informal care for older people [1]. Recently, there has been a proposed definition of long-term informal care, which is assumed to involve care provided to people who need support because of disability or old age and refers to care activities that may involve help with activities of daily living and instrumental activities of daily living [2]. Similarly, long-term informal care is assumed to be provided for three consecutive months by someone in the social environment of the care recipient , and the caregiver is not paid for providing care [2,3]. The Portuguese sociodemographic reality demonstrates the European trend of the increase in the population's ageing index, especially in recent years [4]. Ageing is associated with a high rate of total dependence, especially concerning dependence for activities of daily living and instrumental activities of daily living , with repercussions in the scope of long-term informal care [5]. The population ageing index in Portugal was 153.2% in 2017, revealing a growth trend in recent years [6,7]. The Danish context, in turn, verifies the trend of other European countries, with the ageing rate fixed at 112.9% in 2017 and the older people dependency rate fixed at 29.6% [8]. Recent data have shown that in the 4th and 6th waves of SHARE, Portugal had the highest percentage of people older than 50 years provided with informal care within the household in both waves, namely, 11.5% in the 4th wave and 12.7% in the 6th wave compared to other countries [9]. Nevertheless, there is an inverse relationship with the rate of coverage of formal care, whose reasons point to the scarcity of formal caregivers, the insufficient socioeconomic resources of informal caregivers, and the cultural issue of family care [9][10][11]. On the other hand, in Denmark, studies point to a lower provision of long-term informal care compared to formal care, which is a situation justified by the better socioeconomic conditions of older people and their families, as well as by the social and health policies instituted in health care [12,13]. A recent report by Organization for Economic Co-operation and Development shows that although these two countries in 2017 presented different contexts in comparison to OECD countries, the percentage of informal caregivers older than 50 years was on average 13%, and a wide variation in the intensity of care provided was evident, namely, in Portugal and Denmark [1]. These data demonstrate that Denmark is one of the countries with the lowest rates of daily care, similar to other Nordic countries, whose situation is also associated with the well-developed long-term formal care sector and better-charged coverage [1,14]. In Portugal, the reality is different, showing that most informal caregivers provide daily and more intensive care [15]. Portugal is the second OECD country with the highest rate of informal day-care provided by women , leading to an associated burden with care and negative effects on the health of caregivers, particularly females [1,15]. On the other hand, the overall way in which long-term care is implemented in both countries reveals different realities, with an impact on informal care [16]. In the Danish context, long-term care consists of four types of preventative measures, rehabilitation, home care, and homes for older people, and is implemented publicly or privately by the municipalities, mainly free of charge and financed by general taxation, with the aim of deinstitutionalization, rehabilitation, and autonomy, where the role of informal caregivers tends to be smaller compared to other European countries [14,16]. In the Portuguese case, the formal system of long-term care, besides being traditionally operated by social organizations, includes the national network of integrated long-term care with a social and health component and a high rate of utilization, which raises questions about its financial sustainability [16]. Moreover, problems of access and price affordability concerning formal long-term care persist, reflected in one of the highest rates of care provided by informal caregivers in the EU-27 member states [15]. Given the above, this study is of fundamental social importance to understand and analyze the characteristics of long-term informal care in the two countries. The general aim of the present study is to analyze how different Portugal is from Denmark regarding long-term care. Two specific goals will be addressed: How is long-term informal care received by older people in both countries, concerning personal care by informal caregivers who are part of their household? How is long-term informal care received by older people in both countries, concerning personal care by informal caregivers who do not live with them? It is expected that the present study will identify differences and similarities between the two countries in the context of older people being beneficiaries of long-term informal care. In addition, the data from this study will allow a better understanding of long-term informal care in both countries, showing the importance of the evolution of knowledge and the need to conduct studies related to the study, especially in the face of the current pandemic situation for Corona Virus Disease . Indeed, recent studies already show that during this period, informal caregivers have demonstrated numerous difficulties related to concern for their well-being and that of the older people they care for and the consequent increase in the burden related to mental health illnesses ; socioeconomic factors and; difficulties in accessing health care for themselves and the people they care for [17,18]. --- Materials and Methods This study is cross-sectional, observational, and analytical. We used SHARE as the basis for our data study. SHARE is the first longitudinal and cross-national research project collecting data on ageing and provides access to the informal care sector of people older than 50 years in 27 countries in Europe and Israel [19]. Additional information about the survey can be found on the project's webpage [20]. --- Sample and Data The present study used data from the SHARE 6th wave, release 6.1.1, that occurred in 2015 [21,22]. The SHARE's 6th wave used probability-based sampling and was conducted using computer-assisted personal interviews in panel households [21]. For the 6th wave of SHARE, probability-based sampling was used to draw inferences about the population aged 50 years and older by a multi-stage stratified sampling design [23]. For the Portuguese SHARE sample, the target population was defined as all Portuguesespeaking residents, born until 1960, and their spouses/partners, regardless of their age [24]. For the Danish SHARE sample, the target population was defined as all residents who speak Danish and who were born until 1960 [24]. In both countries, data collection was conducted through interviews, according to the questionnaires available for wave 6, either in Portuguese or Danish [25]. In both samples, analysis of the width and magnitude of the 95% confidence interval was used to evaluate the uncertainty of estimates. Considering the purpose of the present study, one additional restriction was applied to the target population in both countries, namely: 65 years or older. Thus, we adopted the definition of older people proposed by the European Union, as a person who is 65 years old [26]. In the case of Denmark, the final sample size corresponded to 1878 respondents, and, in Portugal, the final sample size was 1013 respondents, corresponding to a total number of participants of 2891 respondents. --- Measures of Variables In this study, the dependent variables were long-term informal care, referring to personal care, received by older people from non-household caregivers, and long-term informal care, referring to personal care received by older people from household caregivers. For the variable "long-term informal care, referring to personal care, received by older people from non-household caregivers", we considered all who answered affirmatively to the question: "Please look at card 27. Thinking about the last twelve months, has any family member from outside the household, any friend or neighbor given you any kind of help listed on this card?" and cumulatively chose the type of help "personal care: i.e., dressing, bathing or showering, eating, getting in or out of bed, using the bath" in the question "Which types of help has this person provided in the last twelve months?" . For further details, see Appendices A and B. For the variable "long-term informal care received by older people from household caregivers", we considered all who answered affirmatively to the question: "And is there someone living in this household who has helped you regularly during the last twelve months with personal care, such as washing, getting out of bed, or dressing?" . For further details, see Appendix C. Moreover, in the characterization of long-term informal care received by older people from both non-household and household caregivers, regarding personal care, the kinship of the caregivers was considered. As such, the responses to the questions: "Which family member, friend, or neighbor helped you in the last twelve months?" and "Who helps you with personal care in the household?" were considered. Hence, the variable "kinship" was created, which resulted from the aggregation of the responses to the answer: "Who gave you help?" into three categories: "spouse/partner"; "child"; and "friends/other relatives/neighbors". It is also important to highlight that in the construct of the "kinship" variable, the grouping into the referred categories resulted only from the options chosen by the older people who composed our sample. For further information, see Appendices A and C. The frequency of long-term informal care received by the older people from caregivers outside the household was also considered in the characterization and resulted from the response to the question: "In the last twelve months how often altogether have you received such help from this person? Was it . . . ?" . In this way, the variable "frequency" was created from the aggregation of the answers in three categories: "almost every day"; "almost every week" and "almost every month/less often". Regarding the frequency of long-term informal care received by the older people from household caregivers, it is important to mention that in the wave 6 questionnaire, in the question: "And is there someone living in this household who has helped you regularly during the last twelve months with personal care, such as washing, getting out of bed, or dressing?" , the authors informed that "By regularly we mean daily or almost daily during at least three months". No further information about the frequency of this care was asked throughout the questionnaire. Older people, from both countries, who simultaneously reported receiving help with personal care from both non-household and household caregivers constituted a small group and were therefore excluded from the analysis. Considering the literature review, two groups of variables of interest were considered in the study analysis, namely: sociodemographic and economic variables and health variables. The sociodemographic variables considered were age at the time of the interview and further categorization into six age categories; gender; marital status; educational level to categorise income terciles. The health variables that were used in the study referred to the presence of chronic diseases, limitation in ADLs, limitation in IADLs and depression, and binary variables were created from the variables "chronic", "adl", "iadl", and "Euro-D". For the classification of functional dependence, the following measurement instruments were used: the Katz index to characterize ADLs and the Lawton and Brody index to characterize IADLs [27]. Depression was assessed using the Euro-D scale [27]. Table 1 presents the study's variables considered to characterize older people and long-term informal care. --- Statistical Analysis This study was developed in two phases. In the first phase, chi-square tests were performed to assess the differences between the older people in the two countries under study, namely, Denmark and Portugal, in terms of their socio-demographic, economic, and health factors, as well as in the characteristics of the long-term informal care received, referring to personal care. In addition, effect size measures , proposed by Cohen, and their confidence intervals were used to identify statistically significant results, even if small differences existed [28]. Calibrated individual weights were used in this descriptive analysis due to the nonuniform sample design of the SHARE survey. In the second stage, multivariate logistic regressions were conducted to assess the determinants for the occurrence of the two types of long-term care received by older people about personal care, i.e., those provided by non-household informal caregivers or by household informal caregivers. For both types of long-term informal care, sociodemographic, economic, and health variables were considered . Finally, an interaction was introduced to determine whether age categories change older people's availability to receive formal long-term care, considering their country. The likelihood ratio test was used to assess the significance, the Hosmer and Lemeshow test was used to assess the fit of the models, and residual analyses were performed. The "Enter" method was applied for each model. For all statistical analyses, a p-value < 0.05 was chosen as the significance level. --- Results --- Sociodemographic, Economic, and Health Participants' Characteristics The sociodemographic, economic, and health characteristics of the study population according to the country are shown in Table 2. The statistical tests for the comparison of the two groups showed significant differences for all analyzed variables between the group of older people from Denmark and that from Portugal. Overall, the Portuguese older people group was older than the Danish older people group . In addition, the older people group in Portugal had a lower percentage in the following age categories: 65-69 years old , 70-74 years old , and ≥90 years old . On the other hand, it was found that the older people group in Portugal had a higher percentage in the 75-79 age group , 80-84 age group , and 95-89 age group . As for gender, we observed that in both countries the majority of participants were women, especially in Portugal . The majority of the older people in both countries were married or living with a partner, especially those of Portuguese nationality . In terms of the level of education, the older people group from Denmark had higher levels of education than the older people group from Portugal . Regarding annual household income, the older people group from Denmark had a higher household income than the older people group from Portugal . In terms of health, the older people group from Portugal had the highest proportion of participants who reported the presence of more than two chronic diseases ; the highest proportion of older people with depression ; the highest proportion of participants with one or more limitations in ADLs . Considering the effect size, which measures the magnitude of the differences found, they were significant for most of the variables under analysis, except for the gender and depression . Therefore, large effect sizes were identified in the variables referring educational level and household income; medium effect sizes were identified in the marital status variable; and small effect sizes were identified in the remaining variables, namely, age and age , chronic disease, depression; limitations in ADLs; limitations in IADLs. --- Long-Term Informal Care Characteristics Received by Older People Relative to Personal Care The characterization of the long-term informal care received, relative to personal care by the study population, according to the country, is shown in Table 3. In terms of the long-term informal care received by older people from non-household caregivers, we observed statistically significant differences between the two groups regarding the frequency of its occurrence; when it is provided by the children, by friends/other relatives/neighbors; and if it is provided almost every day, almost every week, and almost every month/less often. Overall, the Portuguese older people group had a higher percentage of this type of care received , a higher percentage of care provided by children and by friends/other relatives/neighbor's ; and a higher percentage of care received almost daily . Nevertheless, the Danish group of older people showed a higher percentage when the frequency of care occurred almost every week and when it occurred almost every month/less often . Regarding the long-term informal care received by older people, relative to personal care, from household caregivers, there were statistically significant differences between the groups regarding the occurrence of care and whether it was provided by either spouses or children. The older people group in Portugal had a higher percentage of long-term informal care provided by informal caregivers , a higher percentage of care provided by their spouse and by children . The effect size on the variables described above was found to be significant, although of small magnitude. --- Ability of Older People to Receive Long-Term Informal Care, Related to Personal Care To explain the ability of older people to receive long-term informal care, related to personal care, either by non-household caregivers or household caregivers, logistic regressions were performed . Regarding the ability of older people to receive informal care, related to personal care, by caregivers outside the household, model 1 explained about 21.8% of the variation in the receipt of this care and indicated age, marital status, household income, number of chronic diseases, limitations in ADLs and IADLs as significant variables. Indeed, according to model 1, the older people were, the more susceptible they were to receiving care from a caregiver outside the household , as well as older people not living with their spouse . Moreover, older people with a higher annual household income had lower odds of receiving informal care from caregivers outside the household . Considering health, those who were more likely to receive informal care, related to personal care, were all those who reported having more than one or two chronic diseases , one or more limitations in ADLs , and one or more limitations in IADLs . To understand whether age changed the association between the country of the older people and the likelihood of receiving informal care from caregivers outside the household, an interaction term was included. Model 2, which explained about 22.5% of the variance in older people receiving long-term informal care from non-family carers, showed that the results remained stable except for the results for age and country. Hence, it was observed that the older people from Portugal and the country*age interaction was significantly associated with receiving informal care from caregivers outside the household . On the other hand, regarding the likelihood of older people receiving informal care, referring to personal care, from household caregivers, model 1 explained 39.3% of this care, with age, marital status, level of education, annual household income, country, depression, and limitations in ADLs and IADLs as the variables considered significant. Therefore, according to model 2, the probability of receiving informal care from caregivers belonging to their household was highly correlated with the age of the older people , similar to older people from Portugal . Older people with the highest educational level ; annual household income ; depression ; and limited ADL and IAVDS were more likely to be cared for by caregivers in the household. On the other hand, older people who did not live with their spouses were less likely to be cared for by a household caregiver. To understand whether age changed the association between the country of the older people and the likelihood of receiving informal care provided by household caregivers, an interaction term was introduced. Thus, model 2, which explained 39.5% of the variation in the older people receiving long-term informal care from household caregivers, showed that the results remained stable except for the country. Indeed, whether the older people were from Portugal and were more aged were not significantly associated with the fact that they received informal care by caregivers belonging to the household. --- Discussion Long-term informal care for older people has increasingly become a phenomenon worth studying within health and social sciences due to its impact on society and health policymaking [13,29]. The present study focuses on analyzing the relationship between the long-term informal care received by older people, regarding personal care provided by caregivers from outside or within their household, and the country of their origin, namely, Portugal and Denmark. The results of our study suggested that there is a significant association between whether older people receive long-term informal care, concerning personal care, from caregivers outside the household or from household caregivers, and their country. Reinforcing the aspects mentioned above, this study also shows that older people from Portugal are more likely to receive long-term informal care, concerning personal care, from caregivers belonging to the household and, as they get older, they are more likely to receive these types of care. These results are in line with some studies conducted in recent years, which show that in Portugal the provision of long-term informal care of older people who need support in their personal care, either by household or non-household caregivers, is a clear reality [9,30]. The National Health Survey was developed in 2014, and subsequently in 2019, showed that in Portugal, about 10% of the population of people older than 15 years provides informal care [31], underpinning that in the Portuguese context, long-term care depends strongly on informal caregivers, but their needs are not met [15]. Hence, it becomes necessary to analyze the impact of informal care on the health of informal caregivers and their social interactions [9,30]. Our study also reveal that the older people in Portugal lean more towards receiving long-term informal care, related to personal care, from caregivers outside the household who are their children and friends, with a frequency of almost every day, while the older people in Denmark tend to receive more of this care almost every week or almost every month. Indeed, previous studies conducted in the Portuguese context show a propensity for a high frequency of informal care provided by caregivers who did not reside with older people [9,32]. Generally, this care provision stems from traditional family patterns, characteristic of southern European countries, in which the family has to care for the older people, and not of government institutions [33]. Most of this care is provided mainly by daughters and is most often performed intensively, i.e., daily, with a higher risk of depressive symptoms and burden [34], a situation which contrasts with the Nordic countries' realities. Even though in the Nordic countries there are more informal caregivers from outside the household, usually the children of older people, the fact is that this care includes other dimensions besides personal care and therefore there are few intensive caregivers [29,35]. The current fact may be related to the differences in political strategies and good social and health governance regarding informal care in Europe [36]. In the case of Nordic countries, in which Denmark is included, there is mostly informal care provided in a nonintensive way, that is, the perspective of playing the role of caregiver is seen as improving human relationships and not so much in knowing how to care in an instrumental way, that is, in providing care related to ADLs and IADLs [7,33]. On the other hand, data from our study demonstrate that older people in Portugal tend to receive long-term informal care from caregivers belonging to the household who are mainly their children or their spouses or partners. Studies conducted in recent years in Portugal show that in the Portuguese context, there is a high prevalence of informal care provided by caregivers belonging to the household [5,9,11] and that this harms caregivers' mental health, especially or caregivers older than 50 years, with reported depressive symptoms and low economic and social resources in accessing mental health care [9]. From another perspective, data from our study show that, in general, older people in both countries, as they age, are more likely to receive long-term informal care, referring to personal assistance, either by caregivers outside the household or by caregivers belonging to the household. This finding is supported by other studies in that the advancement of the ageing process is a factor that provides the need for care from other members of the older people social network, with greater significance for their children [3,30,37]. In addition, data from our study show that older people who do not live with their spouses are more likely to receive long-term informal care from caregivers outside the household and are less likely to receive personal care from caregivers belonging to the household. Recent studies showed that the fact that older people do not live with their spouses is associated with a greater willingness to receive help from caregivers outside the household [30,38]. In some cases, this type of care can be complemented with formal long-term support [38], although this must be framed within the social and health policies adopted by each country. In turn, the fact that older people do not live with their spouses is associated with a lower likelihood of receiving informal care provided by caregivers belonging to the household, as shown in other studies. Indeed, several studies show that older people who live with their spouses are more likely to receive informal care from caregivers belonging to the household, especially their spouses, and this reality is more evident in Portugal than in Denmark [9]. On the other hand, in the Danish context, there has been an increase in the proportion of older people living alone, which in 2018 was higher than the European average [14]. Other findings from our study demonstrate that older people with high household income are less likely to receive long-term informal care from caregivers outside the household, while people with a higher level of education and a higher household income are more likely to receive care from caregivers in the household. Concerning studies on income and education level developed in recent years, the results differ. While some authors show that people with a lower income and less education tend to receive more formal care [39], other studies have shown that older people with higher income levels or a higher level of education show a greater ability to receive formal or informal care [30,40]. The results of our study and those found in other studies can be explained by considering several factors, including how social and health policies are implemented to support both formal and long-term informal care, specifically regarding access and financial support [16]. In terms of health, our study shows that older people with two or more chronic conditions are more likely to receive long-term informal care from caregivers outside the household and those with depression are more likely to receive care from caregivers within the household [16]. Indeed, recent studies have shown that the presence of two or more chronic illnesses increases the likelihood that older people will receive long-term informal care due to the process of functional dependency that is set in the process of multiple chronic illnesses [16,30], although they do not specify whether this care is provided by non-household or in-home caregivers, so it is important to conduct further studies to validate this inference. In turn, the presence of depression increases the likelihood that older people will receive personal care from informal caregivers residing in the home. Such evidence is supported by studies showing that the existence of mental health problems and specifically the case of depression is associated with a decline in the functional abilities of older people and their ability to self-care [41,42]. On the other hand, depression has been identified as a predictor of disability in older people, which increases the need for care assistance [35,36]. However, studies do not detail whether caregivers are external to the household, so more evidence is needed in this regard. In turn, data from our study showed that older people with one or more limitations in ADLs and IADLs are more likely to receive long-term informal care, referring to personal assistance, either from people outside the household or from home caregivers. The presence of a limitation in ADLs increases the likelihood of older people receiving long-term informal care by worsening their ability to provide personal care, and studies in both countries support our findings, showing that as the ageing process occurs, the process of dependence on basic activities of daily living is becoming a reality [30,34,43]. In turn, the presence of limitations in IADLs because, given the ageing process in approaching the end of life, the ability to deal with the components related to personal management and social and financial resources of older people is diminished. This finding is supported by other studies that show the occurrence of worsening chronic diseases as a factor that increases dependency and thus the possibility of informal care [4,30,32]. Overall, the results of the present study agree with the existing literature, which demonstrates its internal and external validity and adds content to scientific knowledge given the significance of the results obtained. However, it is important to note that the results should be carefully interpreted, and therefore generalized, given the characteristics of the samples. In addition to exploring the dimension of long-term informal care, this study also contributes to closing the knowledge gap on health data in ageing. The need for health data analysis on ageing is an important issue, as reflected in goal 17 of the Sustainable Development Goals: "17.18: By 2020, enhance capacity-building support to developing countries, including for least developed countries and small island developing States, to increase significantly the availability of high-quality, timely and reliable data disaggregated by income, gender, age, race, ethnicity, migratory status, disability, geographic location and other characteristics relevant in national contexts" [44] , which demonstrates the need for countries to make agedisaggregated health data available to improve the use and comparison of health data across and within countries and regions and also over time [45,46]. In this context, it is increasingly clear that, throughout ageing, certain factors that predispose people to disease occurrence, increased disability, and the use of health care services vary by age group, and further research in this area is essential [46]. On the other hand, it is important to note that in this study, variables such as the policies implemented for long-term informal care in both countries, as well as the extent of formal care, were not studied, so it is important to analyze them for future research. Along these lines, it is important to mention that the data from this study can be useful in analyzing how long-term care, specifically informal care, is designed and implemented by health and social support teams. Indeed, as far as health teams are concerned, when nurses are included, the need to know how long-term informal care is designed and implemented will be essential to adjust therapeutic interventions, not only for the older people who need informal help, but also for the informal caregivers themselves. Nevertheless, the study has some limitations such as the small size of the Portuguese sample as well as that of the Danish sample the low number of older people who responded to the question; and the impossibility to assess causality because this is a cross-sectional study. --- Conclusions This study demonstrates the reality of long-term informal care in Portugal and Denmark specifically related to personal care, received by older people. Ageing in both countries is a similar sociodemographic reality, with a high percentage of older people with chronic disease and dependence. Nevertheless, Portugal provides long-term informal care to older people who need support in their personal care, either by household or non-household caregivers, which is quite a different reality than that in Denmark. Therefore, the study demonstrates that it is important to scientifically analyze health and socioeconomic policies in terms of ageing and long-term care, especially when provided by informal caregivers. There is widespread ageing in Europe, but the policies implemented may have equitable perspectives for European citizens, respecting the cultural dimensions and the exercise of freedom of choice in informal care by caregivers and people with disabilities and dependency, safeguarding health promotion. On the other hand, this study demonstrates the need to look at long-term informal care from both the perspective of the care receiver and the provider. It is important to understand these two realities to adopt public policies that are integrative and that respond to the health and social needs of both the older people who receive care and the caregivers. This issue became even more evident during the 19-COVID pandemic, which highlighted the exposure of informal caregivers to the most vulnerable situations concerning their health status and socioeconomic situation [47]. Finally, it is considered that the future steps can be as follow: conduct a comparative cross-sectional analysis between Portugal and a set of Mediterranean and Nordic countries, which may have similar patterns to the object of the current study and conduct a crosscountry and longitudinal analysis to measure and interpret differences related to long-term informal care, namely, between the two countries, which would allow studying how the --- Data Availability Statement: The access to the data collected and generated in the "SHARE" project and used in this research is provided free of charge for scientific use worldwide, subject to European Union and national data protection laws, and the publicly available Terms of Use [22] Access to the data is available online . --- risk group of the older people coped with the health-related and socioeconomic impact of the recent COVID-19 outbreak. "Personal care: e.g., dressing, bathing or showering, eating, getting in or out of bed, using the toilet". --- 2. For example, with gardening, transportation, shopping, household chores or help with paperwork, home repairs, such as filling out forms, and the settling of financial or legal matters. --- Appendix C Content from the 6th wave of the SHARE questionnaire regarding social support, with data used in the characterization of long-term informal care received by older people from household caregivers. 1. "Personal care: e.g., dressing, bathing or showering, eating, getting in or out of bed, using the toilet". 2. For example, with gardening, transportation, shopping, household chores or help with paperwork, home repairs, such as filling out forms, and the settling of financial or legal matters. --- Appendix
The knowledge of long-term informal care is particularly interesting for social and health measures related to ageing. This study aims to analyze how Portugal differs from Denmark regarding long-term informal care, specifically referring to personal care received by older people. A crosssectional study was developed in Portugal and Denmark through the Survey of Health, Ageing and Retirement in Europe (SHARE) in 2015, with a total of 2891 participants. Descriptive statistics and logistic regressions were performed. The findings suggest a significant association for older people from Portugal who receive long-term informal care from non-household caregivers and household caregivers. Moreover, as they age and are from Portugal, their availability to receive long-term informal care from non-household caregivers increases. Furthermore, older people in Portugal are more likely to receive long-term informal care from a household caregiver. It is important to take a closer look at long-term informal care in both countries and think about healthy ageing policies in the current context of the ageing population. This study provides knowledge about disaggregated health data on ageing in the European region, helping to fill research gaps related to older people.
Introduction In 2018, the World Health Organization , together with the UN Human Rights Office and the UN Women, published a statement calling for the eradication of virginity testing because of its immediate and long-term impacts on women's physical, psychological, and social wellbeing . The statement thus posits that virginity testing is a harmful cultural practice that sustains and reinforces the oppression of women and that violates women's human rights. HCPs are cultural practices and behaviours that are viewed as harmful to people's physical and mental health, yet are considered normative in the cultures, communities, and countries that practice them ). They most commonly affect women and are thus presumed in dominant narratives to be grounded in unequal gender norms ). Female genital cutting/mutilation is the most well-known example, but other examples include hymen construction, forced marriage, honour-based violence, denial of reproductive autonomy, and, as of 2018, virginity testing.¹ The discussion of HCPs has largely been centred around women in the Global South; however, due to increasing migration, both the term and the practices have become more prevalent in the Global North , which has instigated the political, social, and ethical debates in several European countries about how best to address these practices. Virginity testing consists of an examination of a woman's genitalia to ascertain whether she has had vaginal penetrative intercourse. The procedure is grounded in the view that women should remain pure until marriage, and is commonly performed with the goal of proving to the woman's family, future family-in-law, and/or future husband that she is a virgin, as the family's honour depends on women's chastity . While virginity testing is traditionally practiced in countries in the Global South, in recent years the practice, just like other practices under the banner of HCPs, has become more prevalent in countries in the Global North due to increasing levels of migration , with migrant women requesting a virginity certificate from their physicians, a statement that provides evidence of their virginity status, rather than virginity tests as such. Recent debates in Europe about the best way to respond to migrant women's requests for virginity certificates from physicians have, implicitly and explicitly, been structured around the question of whether the request is the outcome of an autonomous choice made by an autonomous subject. The general consensus in dominant political and public approaches to the issue is that it is not, and thus that physicians should not issue such certificates, unless when in extreme circumstances a woman's safety is at risk. In this article, my intention is neither to resolve the question of whether or not migrant women have a choice in their requests for virginity certificates, nor to engage with the question of whether or not choice or autonomy is ever truly possible. Instead, my primary intervention in the debate is to explore the ways in which discourses of autonomy and choice are mobilised, and their effects on how certain subjects and practices are read and responded to, and thus produced. As Longman and Coene have argued, HCPs have come to the fore as cultural difference increasingly came to be viewed as problematic against a backdrop of increasing xenophobia and Islamophobia in the Global North since 9/11, and the ongoing disadvantaged socio-economic position and educational levels of migrant minorities compared to majority groups . Indeed, they argue, as policies that were designed to enhance the status and inclusion of such groups were considered "failed" at the start of the millennium, they were replaced with "more nationalist discourses and policies of forced integration, assimilation, and citizenisation" . Farris thus points out the rise in femonationalism in the European context, an ideology that emanates from the convergence of right-wing, some feminist, and neoliberal politics and that positions women's rights as national values that are under threat from the non-Western Other. Against this backdrop, cultural practices that were "deemed incompatible with liberal notions of gender and sexual inequality have received heightened public and policy attention" . One might thus consider the cultural context of the sudden attention to virginity certificates as part of a discourse that positions the choosing subject as central, yet simultaneously aims to achieve assimilation. It is perhaps not surprising, then, that the statement about virginity testing published by the WHO garnered a response from medical associations and governments in Europe, which have taken measures to discourage physicians from issuing virginity certificates. In 2019, for instance, the Belgian Orde der Artsen [Order of Physicians] urged physicians to no longer provide virginity certificates to patients , while in the Netherlands the KNMG [Royal Dutch Medical Association] advised in 2018 that physicians should only write virginity certificates in situations where the woman in question faces immediate danger . In France, the Loi confortant le respect des principes de la république [Bill Reinforcing the Principles of the Republic], passed by the French government in August 2021 to combat radical Islamism and separatism, has banned physicians from issuing virginity certificates by rendering it an offense punishable with fines and prison sentences. In response to this bill, a number of Members of the European Parliament raised the question if the European Union intended to condemn and  1 The positioning of such practices as inherently tied to patriarchal norms and harmful to women and girls has been met with criticism. For critiques in the context of female genital cutting, see for instance, Gruenbaum, Earp, and Shweder; Earp; Njambi. ban virginity certificates and if it would recommend to its member states that they "impose penalties on the preachers who promote such practices and the family members who insist on such examinations being carried out" . The media coverage of the responses to virginity certificates shows that such sentiment is not an exception and has broader cultural support . What is striking, however, is that institutional calls in Europe that seek to discourage or ban the issuing of virginity certificates claim to respond directly to the call in the WHO's statement on virginity testing , even though this statement makes no mention of virginity certificates and is solely concerned with the practice of virginity testing. The reasons cited for why physicians should not issue virginity certificates similarly replicate those given by the WHO for why virginity testing should be eradicated. Such equation of virginity testing and virginity certificates is also evident in the media coverage of the issue, in which both terms and practices are often referred to interchangeably as though they are one and the same . One might, indeed, argue that these practices are inherently linked and that, as such, banning virginity certificates will automatically result in the eradication of virginity testing. Considering the consensus in western medicine that a physical examination that is able to determine virginity does not exist, there is, however, no reason why writing a virginity certificate should be preceded by a virginity test, nor to assume that it commonly is. It is, furthermore, not clear that virginity certificates have the same or similar harmful health outcomes for migrant women in the Global North as virginity testing in the Global South, which forms the cultural and geographical focus of the WHO statement, nor that virginity certificates and tests in different locations have the same meanings and purposes. Such responses to virginity certificates, then, present cultural and gendered practices related to virginity as one and the same and as ahistorical and universal. Furthermore, they presume that virginity certificates have inherent meaning that is not contextually specific at both the structural and individual level and, as such, halt a thorough interrogation of the grounds and consequences of the ways in which virginity certificates requested by migrant women are interpreted in the Global North. The reasons provided by professional medical associations, physicians, and media for why virginity certificates should be banned are largely related to medical ethical standards, gender inequality, and/or autonomy. Despite the significant amount of attention virginity certificates have received in Europe since at least 2018, literature on the topic in the area of bioethics is sparse, particularly in comparison with other virginity-related practices such as hymen construction . The existing bioethical literature on virginity certificates focusses implicitly and explicitly on evaluating whether physicians should grant the requests of women and, if so, under which circumstances and conditions . As in the political, medical, and public debates, here, too, the conditions that are evaluated relate to questions of medical ethics, gender inequality, and/or autonomy. The general consensus is that virginity certificates should not be provided because they infringe on gender equality and/or go against the rule against fraudulent diagnoses, except in extreme circumstances, such as when a woman's life is in danger, or she is at serious risk of violence. Much of the debate, however, appears to be underpinned by the question of whether requests for virginity certificates should be interpreted as evidence of restriction of migrant women's sexual autonomy or as an expression of autonomous choice, with the aim of protecting migrant women from their oppressive cultures, religions, and/or families. I, however, want to move away from this framework, because I suspect that what underpins the debate is an a priori understanding of migrant women as non-agentic. In this article, I engage in a thought experiment of sorts. Specifically, I juxtapose the practice of issuing virginity certificates and issuing prescriptions for erectile dysfunction medication. I demonstrate that the reasoning behind why migrant women should not be able to access virginity certificates is similarly applicable to erectile dysfunction medication, even though the latter remains largely unquestioned in the political and public debates.² In doing so, I aim to  2 See, for instance, also comparisons of female genital cutting/mutilation and genital cosmetic surgery that highlight the discrepancy in how dominant approaches perceive the agency and victimisation of the women involved . render visible the problems with the ways in which agency is mobilised in debates around virginity certificates. The discrepancy in approaches to both practices, as I will show, demonstrates that to be recognised as an agentic subject and to have one's choices recognised as agentic, one must cite the governing gender norms of the cultural context in which one lives. Finally, I turn to the history of HCPs. I discuss critiques from postcolonial and Third World feminists of the term itself, and of the implications of the use of this term for the ways in which migrant women's agency is conceptualised. I also position the responses to virginity certificates within broader discourses of assimilation in the European migration context. I thus argue that agency functions as a biopolitical, normalising tool for managing normative gender and migrant women. --- Mobilising Agency: Virginity Certificates and Prescriptions for Erectile Dysfunction Medication The reasons most commonly cited for why physicians should not issue virginity certificates are as follows: issuing virginity certificates keeps myths in place, it constitutes deception, it violates women's and/or patient autonomy, it is medically not indicated and/or necessary, it sustains a double standard, and it constitutes complicity in violence against and control of women. I show that each of these reasons also applies to the prescription of erectile dysfunction medication by physicians, yet, while virginity certificates are much debated, prescriptions for erectile dysfunction medication are rarely questioned in the political and public debates. My aim here is not to suggest that these practices are inherently similar or that they are intrinsically different. Instead, it is to highlight the mechanisms that render virginity certificates and erectile dysfunction medication and the individuals who request them as categorically different , and in doing so to argue that access to either certificate is conditional upon one's ability to be recognised as an agentic subject, which in turn is conditional upon one's performance of normative gender. --- Myths One of the arguments for why physicians should not issue virginity certificates is that it keeps in place two dominant myths surrounding virginity . First, the issuing of virginity certificates, it is argued, creates the false impression that there are tests that can determine if a woman has had vaginal penetrative intercourse, commonly through an examination of the hymen. Second, the belief in such tests, in turn, creates the impression that the hymen is a membrane that tears when a penis first enters the vagina and that women bleed upon first penetration. Hence, the logic goes, when the membrane is intact, the woman in question has not had intercourse and is a virgin, and when it is torn, she is not a virgin. Virginity certificates thus assist in controlling women's sexuality because they support the notion that women are by nature virginal until marriage, whereby aberration from nature is positioned as wrong. Issuing virginity certificates, then, in this logic, justifies punishment of women who have strayed, and makes one complicit in the negative consequences of such myths for the social wellbeing of women in cultures that place high importance on women's virginity. As such, physicians should refrain from issuing such certificates, and should instead understand that migrant women have misconceptions about the hymen and virginity, and educate them about these matters . While I agree with the premise of such arguments, they require further nuance. First, in positioning education as the solution to the problem, physicians presume that migrant women do not know the workings of their own bodies and the physical and scientific aspects of virginity. It is, however, not clear what the evidence-base is for this assumption. It may be precisely because of the myth that virginity can be determined through tests that migrant women can go out to explore their sexuality and engage in penetrative vaginal sex. If women know that no test can veritably determine virginity, and, furthermore, given that tests are not required in order to provide certificates, then instead of controlling women's sexuality, it may be the case that the myth and access to virginity certificates liberate them from this control. Moreover, as Pekgul argues, virginity interventions can assist in the gradual wearing away of virginity norms, in that it becomes ever more difficult to know who is a virgin and who is not. Pekgul has, furthermore, argued in the context of hymen constructionbut this equally applies to virginity certificatesthat tax funding for such procedures gives young migrant women a signal that society supports their freedom to live their own lives. The arguments in favour of banning virginity certificates because they support myths, then, are premised on the assumption that migrant women are easily fooled, do not know their own bodies, and are easily controlled. Such notions are incommensurable with an ideal western liberal femininity, which shapes the ways in which their requests are read as non-normative and non-agentic, and thus impermissible. Because virginity certificates do not align with a white normative sexually liberal femininity, myths related to virginity are, then, considered only oppressive, and critics ignore that the existence of such myths might enable opportunities for agency for women in oppressive conditions. Applied to the context of requests for erectile dysfunction medication by men, the issue with physicians' refusal to issue virginity certificates due to the myths they keep in place becomes even clearer. One might argue that erectile dysfunction medication keeps in place the myth that for men sexual arousal is, by nature, always accompanied by an erection. It thus reinforces the powerful myth that men can always "perform" sexually and that they are, by nature, sexual beings . When men cannot perform, they are viewed as having failed, as inferior, as pathological . This narrative, then, functions to control men's sexuality and behaviours, in that they must be able to perform, even if it means taking medication. Furthermore, it keeps in place the myth that "real sex" involves penetration. Myths related to the role of penetration in sex and what it means to be a man are not considered problematic and go unnoticed, because by requesting erectile dysfunction medication men confirm notions of masculinity structured around men's active role in sex through penetration and the centrality of the phallus. --- Deception Another argument made against the issuing of virginity certificates is that it requires doctors to engage in deceptive practices . Because virginity cannot be diagnosed as such, the logic goes, writing a virginity certificate consists in the deception of the woman's family, her future husband, and her family-in-law, regardless of her sexual history. Physicians would thus be expected to write a false declaration, which is punishable by law in many jurisdictions . However, physicians can, and do, write "diplomatic certificates" , which can state: "I have not been able to determine that the patient is not a virgin," and as such reflect the truth. Helgesson and Lynöe have, furthermore, argued that to speak of deception implies that the patient and/or her family are looking for the truth of her virginity . This is not always the case, since such practices have evolved into mere social convention so that it is the certificate itself that is the point, and its content is no longer regarded seriously. Writing prescriptions for erectile dysfunction medication, too, could, by this logic, be viewed as deception. By enabling men to have erections through chemical means, physicians may be assisting their patients in misleading or deceiving their sexual partners, for instance with regard to their physical capabilities and performances such as the ability to get an erection, its duration, and its strength, as a quick internet search clearly demonstrates . One might argue, then, that both virginity certificates and prescriptions for erectile dysfunction medication constitute complicity in the deception of others as to people's sexual activity and histories. However, as erectile dysfunction medications allow men to perform normative masculinity, they disappear in their presumed naturalness. Conversely, virginity certificates become the topic of debate in that they are considered to stop migrant women from performing normative western femininity. --- Autonomy Another set of reasons why physicians should not issue virginity certificates is related to autonomy. Such arguments point out that the request for the certificate does not usually come from the woman herself but from her family, future husband, or from her culture or religion . Thus, it harms her autonomy. Another point that is raised is that virginity certificates harm women's bodily integrity or, in other words, that this involves processes that violate her ability and right to exercise control and self-determination over what happens to her body due to external pressures . This presumes that virginity certificates are preceded by virginity testing when it is not clear that is the case and is a consequence of the conflation of virginity testing and certificates. My point here is not to question that family and culture influence women's requests but, instead, to argue that such a blanket approach not only fails to acknowledge that no actions are ever fully autonomous but are always socially and culturally embedded, and that to deny women virginity certificates overlooks the different ways in which they do and can exercise agency, despite living in culturally embedded and constrained conditions. Indeed, as several scholars have argued, women can and do exercise agency, even in oppressive contexts . For instance, in making the distinction between the hymen as a social construct and as an anatomical feature, Cinthio demonstrates that even though young migrant women in Sweden have the scientific and anatomical knowledge to understand virginity and the cultural, religious, and familial demands placed on them through the virginity myth, they actively negotiate different cultures and identities, but may ultimately decide to, at least on the surface, subscribe to the myths valued by their families and cultures. Conversely, questions of autonomy are rarely if ever raised in public and medical discussions of men's requests for erectile dysfunction medication, and the men requesting this medication are not considered to be victims of oppression from their cultures or the people in their lives such as sexual and/or romantic partners and friends. The interplay of expectations of masculinity, medical and pharmaceutical discourses, and neoliberal thinking, however, places significant demands on men to achieve erections. Penis size and performance are critical to hegemonic masculine subjectivity , and successful masculinity is traditionally associated with penetrative sex . Masculine identity is thus constantly under threat due to the centrality of the phallus . As such, pharmaceutical and medical discourses of erectile enhancement have created a crisis of masculinity while simultaneously providing a solution to resolve it: a bigger and more powerful penis through pharmaceutical means . Tiefer argues, "[m]en will remain vulnerable to the expansion of the clinical domain so long as masculinity rests heavily on a particular type of physiological function" . Simultaneously, through the rise of sexual medicine and an explosion of expertise published in magazines and online, bodily changes have been reframed as erectile dysfunction, while emerging neoliberal discourses of health have constructed categories such as "lifestyle medicine" and "lifestyle drugs" , and such as the "worried well" or patients without symptoms , as part of a new market. With their masculinity in crisis and at risk of demasculinisation , men are thus encouraged to engage in processes of "virility surveillance" as their "bodies are reconstructed as sites for biomedical intervention and incorporated in consumerist lifestyle projects" . In Foucaultian terms, then, these men discipline and regulate their own bodies in accordance with the norms of masculinity through technologies of the self, which "permit individuals to effect, by their own means, a certain number of operations on their bodies, their own souls, their own thoughts, their own conduct, and this in a manner to transform themselves, modify themselves, and to attain a certain state of perfection, happiness, purity, and supernatural power" . In other words, cultural discourses shape the ways men experience their own bodies, and thus inform their requests for prescriptions for erectile dysfunction medication from physicians. It, furthermore, shapes the expectations others have of them, such as their sexual partners, their friends, and society at large , which physicians are implicated in by prescribing this medication. While men's requests for erectile dysfunction medication are not autonomous, then, unlike migrant women who request virginity certificates, these men's autonomy is rarely in question. I argue this is because, on the one hand, it has been decided in advance that migrant women are by definition oppressed and do not have agency, whereas men are considered active agents. On the other hand, the request for virginity certificates goes against a western sexually liberal femininity and thus cannot be interpreted as agentic which, in a circular logic, confirms the a priori assumption of migrant women as oppressed as correct, while a request for erectile dysfunction medication constitutes a choice in line with the norms of an active masculinity, and as such, confirms men's role as active agents. --- Medically Indicated A point that is raised regularly is that virginity certificates are medically not indicated. Since there is no test that can determine whether or not a woman has had vaginal penetrative intercourse, it is not the role of the physician to write such certificates . A second argument is that there is no medical reason that necessitates the issuing of virginity certificates, since virginity is not a medical problem and virginity certificates are unnecessary for women's healthon the contrary, such certificates, it is argued, harm the wellbeing and health of women . This point, however, is grounded in a conflation of virginity testing and virginity certificates. What is displaced from view in such arguments is that health and wellbeing extend beyond physical health. Not being able to access virginity certificates may have emotional, psychological, and social consequences for the women in question, as they may be excluded from their families and communities or may become victims of honour-related violence. Some critics of virginity certificates have, indeed, conceded that in rare and extreme circumstances where women are at serious risk if they cannot prove their virginity, physicians should provide them with a certificate as a "pragmatic emergency solution" . Such approach itself, however, may be the cause of ongoing stress for women, who do not know whether or not they will be able to access such a certificate or may be forced to disclose information they are not comfortable disclosing. In other words, this emergency approach continues to place the woman at the mercy of her physician, as a victim, rather than being considered a capable decision-maker who is able to evaluate her own needs. While virginity is not considered a medical problem, the popularity of erectile dysfunction medication suggests that erections are. An inability to get an erection may have underlying physiological causes; however, a closer look at the history of erections and erectile dysfunction medication shows that both the medical character of erectile dysfunction as a particular kind of disorder and the medical necessity to treat it with medication are produced rather than inherent. It was not until the 1980s that male erections came to be viewed as a physiological vascular event, after it was discovered that they could be induced through the injection of chemicals in the penis . What was largely known as impotence, which had psychological causes, thus came to be understood as a physiological and thus a medical and pharmaceutical event . It was, however, not until the accidental discovery of Viagra, a drug initially developed to treat a range of heart-related chest pains but which, it was discovered, induced erections, that decreased erectile function fully came to be medicalised and known as a disorder, treatable through pharmaceutical means. To put it differently, rather than having developed a drug to treat a medical condition, it is the unanticipated drug effect that constitutes the starting point from which bodily processes related to erection came to be viewed as pathological . Croissant thus argues that "the discovery of the drug predated the production of ED as a 'disorder' that required medicalization to achieve a 'normalization' of the sexual functioning" . Since 1998, when Viagra first entered the European and US markets, decreased erectile function came to be known globally as biomedical erectile dysfunction, a pathology treatable through drugs. Thus, the "normal," "healthy," "originary" body to which erectile dysfunction medications will restore the "diseased" patient is itself the outcome of a "medical gaze" as a particular way of conceptualising erections and male sexuality in medical terms. The notion of medical necessity, then, as Njambi argues in the context of female genital cutting, "assume [s] that what is medically necessary is a universal reality that is not produced through specific cultural, political, and historical values and interest, as opposed to practices deemed unnecessary" . In other words, such thinking positions decreased erectile function as universally and ahistorically a medical concern, while requests for virginity certificates are considered an oppressive mechanism that migrant women, if only they were educated enough, would realise negatively affects their health and wellbeing. In response to the question of whether a physician should provide referral information to an anonymous caller who asks for a referral for hymenoplasty, Shweder argues that, in practice, most doctors already expand the definition of what counts as medical and practice social medicine, which includes "any practice aimed at shaping the body in socially functional ways" . He provides the example that most doctors would provide the contact details of a physician to an anonymous caller who requests a referral to get a prescription for Viagra "to enhance his libertine lifestyle as a medical benefit" . In the context of erectile dysfunction, then, medication is legitimated since what counts as medical already includes the social and relational wellbeing of the patient. This, Shweder argues, opens the door to broaden out the notion of the medical to include other socially functional disabilities in order to make a positive impact on a person's sense of wellbeing by improving or enhancing their body such as in the case of requests for hymenoplasty and, I would argue, requests for virginity certificates. "[S]haping the body in socially functional ways" for Shweder, however, simply means to enhance a person's "social functioning in different cultural traditions" . I add to this that the distinctions made between what is medically necessary and unnecessary also shape bodies in socially functional ways through the ways in which it operates as a normalising process. Locating erectile dysfunction medication as a medical necessity reinforces phallus-centred masculinity as the norm, while positioning virginity certificates as medically unnecessary confirms a femininity structured around liberal sexuality as normative. As a consequence, men and women who do not subscribe to such norms are considered aberrant, abnormal, unhealthy, and disempowered, and in need of integration into the norm. In summary, then, the category of medical necessity is thus, first, inconsistent in its approaches in terms of what it considers to be medically necessary; second, may in fact be causing the harms it says it wants to alleviate; and third, is implicated in shaping normative categories of gender which function to Other those who do not subscribe to them. --- Double Standard Virginity certificates should, it is argued, be banned because they reinforce a sexist double standard around virginity for women and men . Women are expected to remain virgins until marriage, while no such expectations are held of menat least not in the strict or practical sense. It is not my intention to question criticisms of this double standard to which men and women are held, and I do not deny that this double standard can have significant harmful consequences for migrant women. To ask, then, whether issuing virginity certificates renders one complicit in maintaining this double standard is important. There are, however, three related points that should be considered. First, and as I mentioned earlier, access to virginity certificates may precisely protect women from the consequences of such double standard. Second, the assumption that virginity certificates uncomplicatedly reinforce and maintain the unequal status quo relies on the simplistic presumption that migrant women blindly accept the demands placed upon them by their cultures while virginity certificates may in fact allow them more freedom to move between the different cultures that make up their lives. Third, the more prevalent virginity certificates become, the more virginity itself becomes an elusive notion and as such, the virginity norm, and thus the double standard may, with time, wear away . Prescribing erectile dysfunction medication is also implicated in sustaining a double standard for men and women. Men are held to a cultural standard in which they must not only be sexually active, but also must be so in very specific and narrow ways: they must be aroused easily, prove their arousal through an erect penis, and use this erect penis to take on an active penetrative role in sex with women . These expectations are widely disseminated through popular culture and advertising. In such representations, men who cannot "perform" become the butt of jokes and their masculinity is questioned . Erectile dysfunction medication, and the medical and pharmaceutical treatment of erections by physicians through prescriptions for such medication, aids in further cementing these standards for men. Not only does this have negative consequences on men's social and psychological wellbeing, but in a system of binary gender, masculinity and femininity gain their meanings from one another in hierarchical ways: to be masculine is to be not feminine . If a sexually active role is coded as masculine, this constructs the feminine as sexually passive and virginal with "slut shaming" as a common occurrence when women move beyond such norms of femininity. Simultaneously, within this sexually active role for men, women are expected to be sexually available to men or risk being labelled prudes. Not only does erectile dysfunction medication, then, cement expectations of masculinity, it simultaneously cements expectations of femininity. This is telling of how the notion of a normative western femininity structured around liberal sexuality functions not so much as a reality but as an ideal and positions migrant women specifically as passive victims. The discussion of virginity and virginity certificates can therefore not be viewed outside of the ways in which standards of masculinity operate in broader social contexts. --- Violence and Control Used to Subordinate Women A final point raised by those who seek to ban virginity certificates is that they function as a form of violence and control to subordinate women . Indeed, virginity norms and standards can and do lead to honour-related violence. The question is whether banning virginity certificates will eradicate such violence or may place women at greater risk of honour-related violence. While negative certificates that state that a woman is not a virgin may increase the likelihood of such violence against women, negative certificates could only be produced in cases where a doctor either knows through conversations with the patient that she has had penile penetrative sex and is willing to put her at risk, or if they based their decision on a physical examination that leads them to believe the patient is not a virgin despite the consensus in the west that such examinations are invalid and should therefore not be performed. Diplomatic certificates would not have such effect. The virginity norm does, of course, exercise control over women's sexuality, but as I argued earlier, virginity certificates may in fact release women from such control and allow them to negotiate competing demands from their different cultures and their multiple intersecting identities. What is assumed here, however, is that women who request a virginity certificate have no agency over their own sexuality and are unknowingly implicated in their own oppression and the physicians who go along with the request, by extension, thus encourage violence and control of women's sexuality. As should be clear by now, erectile dysfunction medication also functions to control men's sexuality by demanding that they take the active, penetrative role in sex, and that they prove their masculinity through an erection. The lack of public acknowledgment of the ways in which men's sexuality is also controlled is simultaneously preconditioned by, and reinforces, men's status as active subjects in society. Their request for erectile dysfunction medication, then, is interpreted as men agentically taking active steps to work on themselves and take control of their wellbeing and sexuality. It is not, however, read through the frame of the cultural imperative for men to conform to normative sexuality. While an inability to achieve an erection does not subordinate men in the binary hierarchy between men and women, as is the case with the virginity norm for women, it does subordinate them in relation to other men grounded in their inability to perform in accordance with governing standards of masculinity . Men's inability to achieve normative masculinity has been shown to lead to acts of violence, between men, but also against women, as a resource for achieving masculinity . Indeed, as Tiefer has argued "gender politics [are] constituted and reflected in erotic relations" . One might argue that prescriptions for erectile dysfunction medication can serve as a protective factor against violence. However, the potential violent consequences of contributing to a gender hierarchy is not a topic of debate in dominant understandings of prescriptions for erectile dysfunction medication, while it is a key factor in dominant reasoning for why virginity certificates should be banned. My intention here is not to suggest that men's sexuality is controlled in the same way as that of women, or that they experience the same kinds and intensity of violence. Instead, it has been to argue that men's requests surrounding matters of sexuality are read as agentic requests coming from an agentic subject outside of the realm of control and violence. The requests of migrant women, however, are read as the outcome of external control that includes the threat of violence and, as such, cannot be recognised as agentic choices made by agentic subjects, an interpretation that is grounded in the a priori assumption that migrant women are cultural dupes with no room to move. This differential treatment of requests for virginity certificates and erectile dysfunction allows the West to present itself as saviour in an attempt to achieve assimilation of non-Western approaches to gender through Othering practices, and in doing so, to control migrant women's sexuality. Thus, in treating these two practices as discrete, the harm being done under the guise of liberation is able to go unnoticed. --- Agency as a Normalising Tool My analysis shows that the reasons provided by those who seek to discourage or ban the issuing of virginity certificates also apply to the prescription of erectile dysfunction medication. In each of the reasons provided, migrant women are denied a position from which they can exercise agency. Requests for virginity certificates are read as evidence that migrant women do not have the scientific and anatomical knowledge to understand how virginity and their bodies work, that they blindly accept sexist standards, that their sex lives are entirely dictated by culture, religion, and family, and that they are complicit in their own oppression and others' control of their sexuality. Such issues are not raised in relation to men's requests for erectile dysfunction medication, and these requests are able to proceed unnoticed. I argue that the differential evaluation of migrant women's and men's agency in these practices is related to normative gender. Specifically, my analysis draws attention to the fact that agency is conditional upon one's enactment of gendered norms: to have one's agency recognised, to be recognised as a subject capable of making choices and have those choices acknowledged as valid choices, one must cite the regulatory norms of gender of the dominant culture in which one lives. Virginity certificates contradictand threatenthe norms of a liberal western femininity structured around the white, sexually liberated, female subject, and are thus rendered not only non-normative but also oppressive and wrong; therefore, the individuals requesting them are positioned as oppressed and thus non-agentic. Conversely, erectile dysfunction medication allows men to enter the sphere of normative masculinity and, as such, men who request them are considered immune to external forces, as though the request originates from within men's individual selves, assisted by the dominant view that men are by nature rational active agents. Migrant women in white western contexts have historically been positioned as non-agentic victims oppressed by their cultures and, as such, practices that do not align with the norm of western femininity are a priori viewed as the outcome of their oppression. Two key things must be noted here. First, the debate around virginity certificates has taken place in the context of HCPs due the conflation of the practice with that of virginity testing. Since HCPs first entered the human rights agenda in the 1950s, the term and its meanings have been criticised by postcolonial and Third World feminists who point out that it operates as a colonial mechanism of control, in that it has been used almost exclusively in the context of the Global South with a focus on non-Western practices and non-Western women, including migrant women in the Global North . Mohanty and Narayan thus point out that Third World women have been represented as an uneducated, victimised, ignorant, homogenous group whose lives are limited both as women and as Third World citizens, in direct opposition to the representation of white western women as educated, modern, autonomous, emancipated individuals who exercise control and freedom over their lives, bodies, and sexuality. The Third World woman, then, as a distinct category, lacks agency and subjectivity in what Narayan refers to as the "package picture of cultures" . This historical relation between HCPs and agency is, however, rarely acknowledged in medical, public, and political debates on virginity certificates, even though such discourses underpin the simplistic responses towards and understandings of migrant women's requests for virginity certificates. As such, it is key to recognise that approaches to practices such as issuing virginity certificates and writing prescriptions for erectile dysfunction medication are not separate from broader colonial historical, cultural, and political processes. Second, the French Loi confortant le respect des principes de la république , while perhaps extreme yet not alone in labelling virginity certificates a separatist practice of radical Islam , shows that the European approach towards virginity certificates cannot be viewed as external to and unaffected by an immigration politics structured around assimilation. Diprose argues that [t]he regimes of social regulation which dictate the right way to live, implicitly or explicitly seek to preserve the integrity of every body such that we are compatible with the social body. Not only do these thereby dictate which embodied existences can be transformed, by whom, and to what end, but, as it is here that comparisons are made and values are born, not all bodies are counted as socially viable. In short, the privilege of a stable place within that social and political place we call the 'common good' is secured at the cost of denigrating and excluding others. The excessive response towards virginity certificates is indicative of how they are perceived to constitute a threat to the common good. Virginity certificates, then, are used as a tool to exclude migrant communities by positioning migrant women as victims in need of protection by the west. Indeed, women "are the first to be targeted in violence against a group's particularity" and their bodies become "a battleground in the determination of cultural identities and the enactment of border politics" . The unequal distribution of agency in approaches towards prescriptions for erectile dysfunction medication and the issuing of virginity certificates thus functions as a biopolitical tool of normalisation that distributes bodies to categories such as, respectively, normal and abnormal, healthy and pathological, and proper and improper, grounded in these bodies performance of western norms of femininity and masculinity. In doing so, current approaches to virginity certificates reinforce an us-vs-them mentality that Others migrant women and their communities. --- Conclusion What I have demonstrated in this article is that understandings of, and approaches towards, the practices of issuing virginity certificates and prescribing erectile dysfunction medication, and the individuals who engage in these practices, are not merely truth found through objective observation . Rather, they are the outcome and effect of a historically, socially, politically, and culturally situated optics that produces meanings and bodies as particular kinds of subjects . My intention in this article has not been to suggest that migrant women do not experience oppression in relation to their requests for virginity certificates and more broadly. Instead, in comparing two seemingly disparate practices, I have shown that whether or not one is viewed as agentic has significant effects on the ways in which one's requests are read. When one's agency is disabled in advance, in a circular manner, what is found is read as evidence of one's status as non-agentic. This process takes place in relation to the performance of normative gender in a context of assimilation. This is important because by positioning migrant women as non-agentic, current approaches to virginity certificates that seek to discourage or ban the practice in order to protect migrant women ultimately replicate the oppression of the women they aim to liberate. This is problematic, because, as Gatens has argued, "if human rights are to come to accommodate women's rights then women's quintessentially human capacity for agency and imagination will need to be recognised and valued by the various communities and nations to which they belong" . Approaches in which agency hinges on the performance of normative gender are unable to recognise the complex ways in which migrant women negotiate their multiple competing identities and cultures. Denying the agency of migrant women denies their voices in matters directly related to their lives, and as such will ultimately only replicate the oppression of the women involved. Current approaches are, as Sullivan, drawing on the work of Alcoff, argues, evidence of epistemological blindness to the specificity of one's own ways of seeing and knowing [which] is characteristic of white optics: it affirms and naturalises western norms and ideals regarding subjectivity, gender, sexuality, the body, pleasure, organs, the common good, and at the same time constructs the "other" woman as an unenlightened and passive victim in need of rescue . The point, then, is that we need to seriously consider the ways in which notions of agency, and our perception of agency, are always intertwined with governing norms and, as such, with history. Medical and policy interventions thus do not simply identify practices and individuals as oppressed and non-agentic, but are also implicated in producing them as such. Medical associations and practitioners, bioethicists, and governments would do well to consider the criticisms of postcolonial and Third World feminists around HCPs to avoid producing the oppression of the women they aim to want to liberate and instating an us-vs-them mentality that places migrant women and communities as inherently Other and backward in relation to the "advanced" "liberal" west. Rather than focussing the debate on the arguably disingenuous question of whether migrant women who request virginity certificates have agency, then, we must draw attention to and be cognisant of the ways in which agency is allocated and denied to particular groups in the context of particular practices. Awareness of such processes can enable a different conceptualisation of agency that centres the lives, voices, and needs of those involved. --- Surgery. '" Australian Feminist Studies, vol. 24, no. 60, 2009, pp. 233-249. doi: 10.1080/08164640902852449.
Several European countries have taken measures to discourage or ban physicians from issuing virginity certificates to migrant women, with the stated aim of protecting these women from oppression. Arguments against the practice are centred around questions of medical ethics, gender inequality, and autonomy. What underpins these arguments is an evaluation of whether women have a choice in matters related to their sexuality. This article shows that the reasons provided for why virginity certificates should not be issued can similarly be applied to the prescription of erectile dysfunction medication, yet the latter practice remains largely unquestioned. It argues that the discrepancy in approaches to both practices points to an a priori understanding of migrant women as non-agentic, grounded in racial gendered norms, and that agency is mobilised as a biopolitical tool to Other migrant women and communities. Current approaches towards virginity certificates thus replicate the oppression of the migrant women they (cl) aim to liberate.
INTRODUCTION Entrepreneurs develop in harmony with the progress of civilization that changes the way humans view the environment that changes, for example, economic growth is not always parallel to people's welfare. This gap is an issue that seems to never end. This condition has made many people take the role of carrying out various social activities to reduce this gap. This action arose out of a sense of social concern to participate in solving the problem of poverty. For example, for example, when an entrepreneur looks at his surroundings, there are still welfare conditions that are contrary to what the entrepreneur is experiencing in terms of economic welfare. Finally, he is moved to invite the group the community joins in its business, this is where a mutually beneficial symbiosis occurs, and indirectly it also reduces the poverty gap. This social phenomenon, being a medium, raises caring people who are moved in their hearts to take part in solving social problems in society. These people certainly have motivation, intentions, ideas and goals so that social problems in society get solutions in forming a more prosperous society. Business challenges in small business activities are increasingly complex. Small businesses are faced with a situation of how to bring their business to maintain its existence. These challenges can come from external and internal, which is the business environment we are facing. This condition is then addressed by the small business to react and put it into plans and actions. One of the challenges faced by small businesses is the market aspect, where product fulfillment is not sufficient. In this position, there is actually a high market opportunity, it's just that small businesses have not been able to meet large amounts of demand. This should be captured as an opportunity, but can turn into a threat, when competitors take market fulfillment. Dfanda rattan, as a small business entity that focuses on the creative industry sector in Jatisari village, Tempeh Lumajang district, is one of the small business entities experiencing this problem. External environmental conditions that affect the continuity of the entity's business, are not fulfilling market demand, due to the problem of labor shortages. Dfanda small business has addressed this obstacle by recruiting productive women in the environment around the business location. This activity is carried out through a matching fund assistance program. The program is a program scheme from the Indonesian government through the Ministry of Education and Culture in collaboration with universities. Based on this phenomenon, the authors will conduct a study of how the impact of implementing sociopreneurship through entrepreneurship training. Social entrepreneurship or sociopreneurship was introduced in the 1970s. This is done to overcome social problems that arise on an ongoing basis. The character who played the role of Joseph Banks in the book The Sociology of Social Movements, this term is used to describe the use of managerial skills to overcome social problems and overcome challenges in the business world . According to him, people who feel moved in implementing the vision and mission, ideas and ideas in social are social entrepreneurs. This term is a trigger for the idea of a new direction with new ideas and a combination of visions, creativity as a means of finding solutions to various problems that arise. In social entrepreneur activities, he is a professional, pragmatic, visionary person from The 4 th International Conference On Economics , Business and Information Technology June 10, 2023 pp. 26-29 community-based initiatives as a means of finding innovative solutions to solve problems faced by society, especially the poor and marginalized. According to that social entrepreneurs usually apply in different spaces, for example in other projects, where the ideas they build are not simply acts of power, but expressions of value and creativity. A community-based social entrepreneur, often starts as a part-time volunteer himself. In addition, Sociontrepreneurs are executives who have vision and are able to align motives with profit motives without sideways in seizing market opportunities. According to a social entrepreneur is a person who is close to social problems with an entrepreneurial spirit and business acumen. This means that personally, social entrepreneur is a combination of individuals who are energetic, persistent, confident with the ability to provide inspirational encouragement so that other people are involved in their activities . Social entrepreneurs have a role as agents of change in the social sector, with the mission of creating and maintaining social value, recognizing and taking advantage of new opportunities to carry out missions, and engaging in sustainable innovation . --- METHOD This study is intended to find out and analyze the extent of implementing sociopreneurship and how it impacts business sustainability for partners and target women's groups. The process to get this answer was carried out in a qualitative way by collecting data by direct interviews. This study was carried out after the implementation of the program on business owners and program participants who became the target group, namely women's groups. The interviews were conducted in stages, starting with the business owner, in this case Dfanda Rotan, then to the target group of partners. --- RESULTS AND DISCUSSION Dfanda rattan is a small business entity whose activities focus on the creative industry of making woven synthetic rattan. The business is located in Jatisari Lumajang village. Sociopreneur, which became the idea of a business owner, began when he found a situation that befell his business, namely a market problem, where the business could not meet more demand, in accordance with production capabilities. This situation is a dilemma, because the fulfillment of this production is not in line with the condition of small businesses, where they do not have enough manpower, as conveyed by Wahyudi as a business owner. "The business that I have been running in recent times has actually experienced good development, as evidenced by increasing market demand, but unfortunately we have not been able to fulfill all of them, I regret this, because surely these opportunities will be taken by our competitors, and what I am worried about is will eventually defeat us" The conditions presented indicate that there is a symptom that initiates the emergence of ideas related to business development. An entrepreneur will think of something that can encourage the sustainability of his business. This situation then gave rise to the idea as a form of social entrepreneurship by involving the potential that exists around the location of the business. Wahyudi further conveyed as follows; "I thought about this problem, and I saw a phenomenon in my business environment. Where the portrait of inequality is still occurring, I finally thought of inviting mothers to join by becoming business partners, this can help increase income which supports the family economy" The phenomenon of economic inequality that is seen by business people towards their environment, encourages them to act not only to solve their business problems, but also to think by empowering the surrounding community so that not only one problem can be solved, but more than that . The concept developed by small businesses is by building partnerships with universities in 2021 as advisors and companions. This activity begins with: 1) recruiting community members from productive women's groups, the reason is that they have time and do not interfere with their husband's activities as the main breadwinner, 2) provide training, 3) provide assistance with simple materials and tools, 4) carry out technical assistance for activities making handicrafts, 5) accommodating sales proceeds. As of March 2022, there are 15 members of the women's group who have joined. Each of them has become a partner for dfanda's small business, and is increasingly skilled and enthusiastic in carrying out activities. The impact on increasing the family's economy is increasingly felt, and gets support from the family. Rohimah, one of the members who is also the group leader, stated as follows; "I thank Dfanda for giving us the opportunity to join his business, and I am grateful that my friends and I can have activities and not just be idle at home" The program is run by Dfanda Small Bisnis, through training and mentoring. The training provided is in the form of training on motivation, skills and management. Through this training activity the main key is to provide an understanding, especially a perspective on business and how to run it both in terms of skills and management . The training was held at the village hall, for 3 weeks tentatively. One member of the Murkayah participants stated the benefits of the training. "This is the first time I received a complete training. I got entrepreneurial insight, and I was trained by Dfanda on the technicalities of making synthetic rattan crafts, as well as being taught how to manage business finances" The aspect of sustainability in sociopreneurs is an indicator of success. One aspect that supports sustainability is the extent to which the benefits are obtained and felt by the target group . According to Rohimah, the group head stated that the implementation of the program, which had taken place from 2021 to March 2022, provided direct benefits from additional income. "Since joining the partnership program with Dfanda small business, the direct benefit is that my friends and I have received additional income. Of course this provides a little relief for our household burden. We see the potential for continued activity, because Dfanda has provided a mutually beneficial cooperation scheme for us, by becoming a partner, and so far it has been going well" Entrepreneurship education will have an impact on new entrepreneurs , when properly designed and planned in a sustainable manner. Curriculum design that is in accordance with the expectations of learning outcomes and post-activities that are accompanied periodically will be able to have a good sustainable impact . Based on the data above, it can be concluded that the process of emergence of sociopreneurs can occur due to a small business environment. Critical awareness and the idea of sociopreneurship emerge when looking at a situation that has become an initial problem for small businesses. The next critical awareness is a phenomenon of economic inequality between entrepreneurs and the community around the business location. This combination is then designed in such a way as to give rise to a sociopreneurship model based on local values. This sociopreneur concept means developing, following different conditions and situations at certain times and situations and in different cultures . Another factor that drives a sociopreneur is the driving environment. Universities as consultant partners are able to provide encouragement to entrepreneurs so they can take action after jointly conducting a study of the business environment itself . This means that in this case the implementation of the idea will be stronger after getting advice from other parties, which will strengthen the confidence to take social entrepreneurial action. --- CONCLUSION Success in business for small businesses is the goal of carrying out business activities. Not a few of the business actors in this sector, are those who not only have a high spirit of business, but also have a high sense of sensitivity. This is driven from the initial conditions that they felt, how they felt when they were in a less secure condition, to the conditions of success that were achieved. Sociopreneurship is a new spirit, where the success achieved will be more meaningful when we are able to achieve it together. The emergence of a social spirit in entrepreneurship is an important aspect as social capital that will be able to help the development of the small industrial sector or MSMEs in developing together.
The purpose of this research is to study the phenomenon of the idea of social entrepreneurship in the business sector at Dfanda Rotan UMKM. The method used is to conduct observations and interviews with informants who own MSMEs and community members of the women's group who have joined the Dfanda Rattan business. The results obtained show that the emergence of entrepreneurial social attitudes for entrepreneurs is influenced by the factual conditions faced by businessmen. Businesses that depart from zero point have been felt by business people so they feel the joys and sorrows. The development of market demand is answered by raising workers in a community empowerment scheme with women's groups in their villages, so that synergy is built. This condition was finally able to answer industrial problems and social disparities in the region.
Introduction There is a widespread belief that sport and physical activity is an important "player" with regards to addressing healthy aging. There are individual-level recommendations about how much physical activity people of different ages should engage in to gain health benefits , but at the same time there are no recommendations for how organizations should organize physical activities to suit as many people as possible for as long as possible. The purpose of this study is thus to explore the characteristics of sport and physical activity initiatives that older adults participate in and to discuss this in relation to recommendations for how arrangers could organize activities for older adults. --- Participation in physical activity and sport for older adults Participation in organized sport and physical activity provides substantial physical, psychological and social health benefits for older adults . Regardless of these apparent benefits, older adults represent one of the least physically active groups in society across the globe . At the same time, few older adults participate in sport clubs . Most older adults instead engage in physical activity in their own regime, the most common activity being walking . Older adults also have different purposes, presumptions, and background regarding sport and physical activities in organized form and having a history of engaging in sport and physical activity throughout life can lead to being generally more active in older age . It can thus be concluded that older adults are a heterogeneous group with regard to sport and physical activity , although what they find meaningful in the activities can be quite similar . --- Organization of sport and physical activity for older adults Older adults have mainly been explored regarding individual perspectives on engaging in physical activity, for example motivation, confidence and resilience as well as barriers to participating and reasons for dropping-out of organized sport . There are limited studies, however, about the organizational perspective on older adults and sport , and more attention could be paid to these dimensions of the "how" in organizational contexts and contents . The studies that have focused on the organizational dimensions of sport for older adults emphasize aspects such as adaptations to create age-appropriate opportunities , modifications in rules , or even creating new forms of sport, similar to walking soccer . Some studies conclude that older adults often are recruited to sport by internal contacts, like personal invitations , and that external recruiting is important but needs more explicit strategies, for example highlighting the different experiences and health and social benefits that participation can give . Previous studies are highlighting that senior associations are emphasized as an important place of recruiting and communicating with old adults about PA . Participation fees are mentioned as a structural feature that can affect organizing perspectives; for example, passing over used equipment between participants could be a solution for older adults with different economic possibilities . So, with this in mind, lowering the thresholds, for example meaning it should be easy to start exercise without no earlier knowledge or experience and where recruiting also is especially important for increasing diversity and reducing social inequality . --- The sport and physical activity landscape for older adults in Sweden There is not much research on what physical activities older adults participate in globally, and this is also the case for Sweden. One smaller Swedish survey revealed that less than one third of the older adults in Sweden were members of a sports club, and slightly more men than women . In a national survey on older adults participating in sports clubs it was concluded that this group was homogenous related to socioeconomic status , but heterogeneous in relation to which sport and physical activity they engage in . In a study from Huffman and Amireault they argue that the organizing of activities for older adults needs to consider a multilevel perspective, such as a socio-ecological framework. This is a conclusion that studies on youth sports have also reached . However, there has been a limited focus on the organizational perspective in research on older adults' sports participation. Studying sport and physical activity initiatives that are ongoing and exploring how they are designed can thus be a way to understand older adults' participation in sport and physical activity in later life. If they are organized traditionally and similarly for all age groups and genders, there is a danger of missing out on possible participants and perhaps creating overly narrow or conservative activities which could lead to limitations in encouraging participation . This research therefore aims to identify what characterizes sport and organized physical activity initiatives for older adults. --- The present study The purpose of this study is to explore the characteristics of sport and physical activity initiatives in Sweden that older adults participate in. In the study, we will investigate different ongoing sport and physical activity initiatives that involve older adults with regard to their focus, organization, intensity, and organizer . We will answer the following research questions: 1) What characterizes the sport and organized PA initiatives that older adults participate in? 2) What characterizes older adults who participate in different sport and organized PA initiatives? We will investigate this using four proposed activity categories, focus, organization, intensity, and organizer, analysing these in relation to both organizational variables and participant variables to answer the two research questions. In this way, questions like these can give a more complete understanding of the In this study, we have used a salutogenic settings-based approach to health promotion in line with to discuss our results in relation to recommendations for how organizers could organize activities for older adults. The salutogenic settings-based approach has its origin in both salutogenic theory Antonovsky applied to a sport context and a health-promoting, settings-based approach for sport clubs Geidne et al. , and Van Hoye et al. . The salutogenic perspective in health promotion stems from a critique of a dichotomous classification of people as healthy or diseased, and a focus on disease "as the departure from the norm and the normal, as that which has to be explained" . In this study we will specifically use the concepts employed in , i.e., drop-in, drop-through and drop-over, in discussing recommendations for the organization of sport and physical activity for older adults. These concepts are also discussed in relation to each other using the word thresholds which can be thought of as steps/changes/phases more than clear cut-points, to discuss how to lower the thresholds into the activities, within the organizations and between the organizations to increase the threshold of drop-out of PA and sport initiatives. --- Materials and methods --- Study design and context This study was conducted with a cross-sectional design using a questionnaire to collect data from 27 ongoing organized sport and physical activity initiatives with older adults in Sweden. The 27 initiatives were either organised by a senior association or a sports club . Ethical approval was granted by the Swedish Ethical Review Authority . The Swedish sport movement is traditionally organized as non-governmental organisations but has extensive government funding that could be described as an "implicit contract" . In recent decades there has also been an increase in other types of actors, like companies and other organizations that run sport activities in Sweden , a trend that can also be observed in other western countries . --- Participants and procedure The sport and physical activity initiatives were located among both senior associations and sport clubs with ongoing regular sport and physical activities in and around a medium-sized city. The sampling was conducted with a snowballing strategy to find as many of the ongoing sport and physical activity initiatives in the region as possible. The criteria for inclusion were that sport and physical activity initiatives should be organized and offer weekly group activities for participants 60 years and above. Exclusion criteria were not organizing for a group or being explicitly organized as rehabilitation, prevention, or treatment of disease, for example an activity prescribed or recommended by the health care system. The recruitment process consisted of contacting the head of the organization/sport club manager by phone. The participants in the 27 recruited initiatives were initially given oral information by the group leader at one of their regular sessions, one week before the data collection took place. Written and oral information were then provided to the participants and informed written consent was received. The questionnaires were handed out in person by the first author. Reading glasses were available, in case participants did not bring them to the training sessions. The participants could fill out the survey on site or request a postage-paid, addressed envelope to send it from home. It was possible to ask questions while filling out the questionnaire on site and also to get in contact with the first author by e-mail or phone. All participants were active in these ongoing organized sport and physical activity initiatives on a voluntary basis. The study took place from December 2019 to early March 2020, when the data collection had to cease due to the Covid-19 outbreak in early spring 2020. All questionnaires were coded and handled confidentially. --- Measures The questionnaire that was used is the Salutogenic Physical Activity Health Resources Questionnaire , developed from previous studies on physically active older adults . SPAHRQ was developed using a salutogenic theory-driven approach as introduced by Antonovsky and further developed for use in studies within sport and physical education . The SPAHRQ questionnaire has been used to report other outcomes in the same sample but in this particular study variables focusing sport and PA participation are presented. The questionnaire has been used in an earlier study . Briefly, salutogenic theory assumes that how we understand health is --- Activity categories Inclusion criteria --- Activity organizer Activity organizer refers to the organizing club or association. A senior association is one where activities take place only for older adults . Sport clubs can have both senior-specific initiatives and activities for other age groups and different purposes; the participants included in this study are in senior activities only. --- Activity focus Activity focus, with the possibility to compete or participate exclusively as a leisure activity. Here activities are categorized as either/or; i.e. if there is a possibility to compete even it is categorized as competition, even if someone chooses not to do so. --- Activity organization Activity organization concerns activities requiring a team to take part in, as opposed to individually performed activities . --- Activity intensity Activity intensity describes the level of intensity of the activity and was labelled as low intensity or medium-to-high intensity according to the MET table scale . Ericson and Geidne 10.3389/fspor.2023.1168312 closely related to both our social, cultural, and natural environment, and our physical, social, and mental resources as individuals . A salutogenic perspective consequently helps us consider individual and organizational aspects of older adults' participation in organized sport and physical activity initiatives as well as the relation between individual and organizational aspects. The focus of this study is on organizational-level characteristics of the physical activity initiative in which the older adults participate. As a tool for analysis, the initiatives were first categorized by the authors into four dichotomous pairs inspired by Eime and colleagues' categorization of leisure-time PA by type , mode and setting . Since these terms are based on adolescents' leisure-time PA, we have adapted and refined them into the four category pairs: activity organizer , focus , organization and intensity . Here follows information about the categorisation. Activity organizer refers to the organizing club or association. A senior association is one where activities take place only for older adults . Sport clubs can have both senior-specific initiatives and activities for other age groups and different purposes; the participants included in this study are in senior activities only. The activity focus, with the possibility to compete or participate exclusively as a leisure activity. Here activities are categorized as either/or; i.e., if there is a possibility to compete even it is categorized as competition, even if someone chooses not to do so. Activity organization concerns activities requiring a team to take part in, as opposed to individually performed activities . Activity intensity describes the level of intensity of the activity and was labelled as low intensity or mediumto-high intensity according to the MET table scale . The 27 initiatives in our final sample were relatively evenly distributed according to number of participants between the activity pairs in the categories activity organizer and activity intensity, but differ in activity focus and activity organization. . Sports and physical activities represented in the 27 initiatives are; group gymnastics, water exercise, which covered almost half of the participants. The other initiatives included are resistance training, tennis, table tennis, indoor boule, walking football, senior Tabata, dancing, golf, bowling, wrestling and outdoor walking. The sports and activities are not seasonally dependent, but ongoing all year round. The activity categories were then related to the organizational characteristics of sport and physical activity initiatives regarding costs , booking possibilities , and recruitment to the initiative . These variables were chosen because they were the quantitative variables on organizational level in SPAHRQ that answered to the first research question. The activity categories were then related to the participants' demographic factors age, gender, education level, city size, and time spent in physical activity per week to answer to the second research question. Education was assessed and classified according to the International Standard Classification of Education from UNESCO with low-level education , medium-level education and high-level education . --- Statistical analysis Descriptive statistics, chi-square tests, t-tests and multivariate logistic regression analysis were performed to determine differences between independent variables related to the four activity pairs. Covariates in the multivariate logistic regression were participants' age , gender , education , and city size . The percentage of missing data for the logistic regressions was 8%, and this was left out of the analysis in listwise deletion . The data analysis was performed using IBM SPSS version 26. --- Results The study included 27 sport and physical activity initiatives with a total of 372 participants, ranging from 60 to 96 years of age ; 60% were women. Almost all the initiatives had participants with a high level of physical activity in everyday life; 93% met the general criteria of 150 min/week of physical activity from self-rated data obtained in the SPAHRQ questionnaire and a range of 90. Below, the results on the first research question on, characteristics of the sport and PA initiatives are presented. Followed by the results for the second research question, what characterizes the participants in the different initiatives. --- What characterizes the different initiatives? Costs for the initiatives vary from free up to around €2,000 for a one-year membership and participation, M = €149 . The lowest costs are found in senior associations, leisure-focused initiatives, individual initiatives, and low-intensity activities . In senior associations, the cost per year is on average €46, compared to an average of €217 in sport clubs. The most expensive activities were tennis and golf. There are also differences in how the participants book their activities in the different initiatives. In senior associations, most activities were booked per semester 60%. In sport clubs the most common booking system was per occasion, 40%. In team sports , the most common way of booking was per semester . The recruitment into the initiatives on the other hand was very similar between the different activity categories. Around 70% were recruited by an internal contacts like family, friends, and colleagues, around 25% by an external contacts like advertisements or senior exhibitions, and around 5% at the participant's own initiative. What characterizes the participants in the different initiatives? The initiatives with the most participants were found in group gymnastics and water exercise, which covered almost half of the participants. Sport clubs have significantly more younger participants than senior associations . Senior associations further had significantly more female than male participants . Sport clubs had significantly more participants living in cities than senior associations. Due to the activity focus, significantly more men participated in competitive activities than women . The same result was found for team sports when comparing men and women . Initiatives with medium-to-high intensity level of the PA had more participants in the 60 to 79 age-range than low intensity PA . A majority of initiatives had participants who began with the activity 1-4 years ago. A multivariate logistic regression was performed to control for all the variables in one block . Age and gender were the variables that had the most effect on which initiatives the participants were involved in. The greatest difference and main finding is that men participate in team sports to a greater extent than women . Concerning the focus on the activity, younger participants and men participate in competitive sports to a greater extent than women in this study. In activities with medium-to-high intensity, compared to low, the age is higher. The results also reveal that which organization that organizes the activity is significant for who the participants are. In sport clubs, compared to senior associations, we find male and higher-educated participants to a greater extent, and people living in small towns to a lesser extent. These findings indicate that the characteristics of both the participants and the initiatives in which they participate are varied. --- Discussion This study has identified characteristics of sport and physical activity initiatives that older adults in Sweden participate in, in terms of how the initiatives are organized and what characterizes the participants in the different initiatives. Exploring sport and physical activity initiatives that are ongoing and investigating how they are designed are a way to better understand older adults' participation in sports and PA and thus be able to organize activities that are more beneficial for their participants. It is of great importance for society as a whole that older adults are physically active and that there are relevant activities for them to participate in. Our main findings predominantly concern the differences between different organizers, in this study divided in sport clubs and senior associations. Who organizes the sport and physical activity initiative seems to affect the characteristics of how it is organized and what characterizes the participants in them. Secondly, despite the different characters of sport and physical activity initiatives, the majority of the older adults are recruited by internal contacts like friends and family. Thirdly, which older adults that participate in which sport and physical activity initiatives can be explained mainly by the age and gender of the participants. Below we will discuss our main findings in relation to previous research and then present our findings in relation to recommendations for possibilities for how older adults can "drop-in", "drop-through" and "drop-over" in sport and physical activity initiatives as a way to reduce drop-out, in line with the suggestions from Geidne and Quennerstedt and Geidne et al. . --- Results discussion To our knowledge, research comparing different types of sport and PA initiatives for older adults in relation to costs, booking and recruitment is lacking. Consistent with previous studies we show that the sports club and the senior associations creates a valuable setting to promote health, with our research adding fresh insights to the small but growing corpus of evidence specifically on health-promoting initiatives for older adults. Which actors that run sport and organized physical activity for older adults can differ between countries, but also within countries . In Sweden, most sports are organized by sport clubs that are non-governmental and are included under the umbrella organization the Swedish Sports Confederation. Organized PA can be organized by sport clubs, but also by other organizations, both non-governmental and private. In this study, one of our main findings was the significant differences in both the character of organizations and the participants in them, regarding whether it was a sport club or a senior association that organized the activity. Sport clubs were generally more expensive, even if some sport clubs have senior discounts and cheaper booking in daytime. However, if equipment is necessary for an activity, costs can still be high. One explanation may be that senior associations have less expenditures for renting spaces for activities, since several of the initiatives take place in rooms also used for meetings and by other organizations. Senior associations also had more booking per semester than per occasion, as is more common in sport clubs. There was a large difference, however, between different sports, with golf, for example, more often being booked per occasion, but not table tennis. Another important finding of our study is that, regardless of what characterizes the activity and the different participants, a vast majority of the participants are recruited by family, friends, colleagues or other internal contacts. Similar results are found by , who conclude that most older adults are recruited by internal contacts and personal invitations. External recruiting is important, but needs better and more explicit strategies, according to West et al. . If the majority of recruiting is internal it is a risk that many older adults will not participate to this kind of sport and PA initiatives also in the future. This can also be discussed in relation to the group of participants included in our study, because they are a very homogeneous group in terms of socio-economic status and health . If most participants are recruited through family and friends, there is a risk that some groups never get invited to join or even know that such activities exist, which will affect the diversity of participation and also lead to social inequality . The third main finding that stood out concerned the differences related to age and gender. Men were more than 21 times more likely than women to be participants in team sports. One explanation of this could be that women who were young in the 1960-70s often did not have the same opportunities to participate in team sports, and what you do early in life often affects what you do later . On the other hand, women participated more often in individual activities. The gender differences in team sport at an older age are in some studies explained by women reported having more barriers to exercise than men . Another study also strengthens the argumentation that males were more motivated than females by mastery and competition in sports, whereas females were motivated more than males by appearance and physical condition . The results also show that the intensity of the activity decreased with increasing age. This could also be related to the fact that older women more often participate in senior associations, where individual low-intensity activities are more common. In senior associations, the cost of the activities was also lower and, as Wong et al. also state, the financial insecurity that some groups experience in later life, for example women, can impact their ability to afford and access physical activities. Due to the results that men often participated in competitive sports than women are in line with what both Hirvensalo and Lintunen and Chen et al. found. Playing competitive sport at younger age was a significant predictor of sport involvement during old adulthood . --- Recommendations for drop-in, drop-through and drop over in relation to older adults In response to the lack of explicit recommendations for how organizers could organize activities to suit as many people as possible for as long as possible, in this section we will offer some suggestions regarding how older adults can drop-in, dropthrough and drop-over in sport and physical activity initiatives as a way to reduce drop-out. Drop-in concerns recommendations for how to lower the threshold for older adults to start to be active, from the beginning, after a break, or when switching to a new activity. For older adults who used to participate in sports the threshold to continuing when older or starting a new activity is probably lower than for someone who has never participated in sports. On the other hand, the threshold to start doing a physical activity in a senior association can be easier to overcome than in other organizations. Here different types of recruitment strategies will be needed to recruit different target groups. As West et al. discuss, other forms of marketing could be a strategy for recruiting and finding new target groups. However, as Wong et al. state, it is not just marketing strategies that are needed; there is also a need for resources for local organizations directly promoting older adults' participation in sport and physical activity. Another recommendation for lowering the threshold to dropin is to design different forms of sport and physical activity for the quite heterogeneous group of older adults, not only when it comes to which sport, but also focus, organization and booking opportunities. How an activity is booked could make it more or less easy for different people to drop in to an activity. Finding different recruitment strategies could then potentially increase diversity and reduce social inequality in sport and physical activity . A third recommendation related to drop-in is to start with short-term projects as a springboard into ongoing activities. The focus in this study was on the ongoing activities, but to increase drop-in for specific groups, or when testing a new form, short-term initiatives can be a complement. It is then important to make a short-term initiative sustainable, for example, by cooperating with other actors, such as outdoor associations, the scouts, and pensioners organizations , or having a strategy for keeping participants within the organization . Drop-through concerns recommendations for how to lower the threshold for older adults to change activities within an organization. One of our main findings in this study is that age is significant for which activity older adults participate in. Hence, there should be an opportunity for older adults to change their form of activity within the same organization, for example from medium-high intensity to low, using a golf cart but still playing golf, or doing walking football instead of football. Changing the form of sport and physical activity can be done while maintaining the social relations that older adults have built up and which most of them find to be a meaningful aspect of participating . Here, a life-course perspective on how to organize sports is recommended . In line with our findings that older adults often reveal that they have been members for a long time and were recruited by internal contacts, such as when their children started or even earlier, planning for drop-through could be a successful strategy. In these features we see possibilities for the organizations to also work with external recruiting in the future, with the aim of reaching a broader public that is less familiar with the settings of sport clubs or physical activity initiatives. Drop-over concerns recommendations for how to lower the threshold for older adults to change from one organization to another. Cooperation between different organizations, for example between a summer and a winter sport, or a senior association and a sport club, could be very beneficial for older adults. Cooperation with other senior associations is also emphasized as an important way of recruiting and communicating in other studies . Geographical considerations, like living in the countryside or in a city, can further affect whether the need for a drop-over alternative is even greater than for drop-through, depending on the size of the organization or the number of organizations in the neighbourhood. It is important to take a holistic approach to the question of increasing drop-in and reducing drop-out among the older adult members. --- Limitations and strengths We have, of course, some reflections on the choices we have made during this journey. For this study we developed a new questionnaire, the SPAHRQ, which of course may have some teething pains. One limitation is that we did not have a question on how long the respondents had been active participants in any sport; we only asked about their current activity. It would have been interesting to compare those. On the other hand, the SPAHRQ was developed from an in-depth theoretical framework for asking questions in a certain way to convey salutogenic theory , which contributes to deepening the knowledge about both organizational and individual factors and the relation between them. We also developed the organizational category pairs of organizer, focus, organization and intensity, inspired by Eime et al. mode, type and setting. In the future it would be interesting if more categories could be developed to explore different characteristics of sport and physical activity initiatives, both for older adults and others, as well as in different contexts. Another sample, which also included for example private gyms with organized physical activity, might have further deepened our results, and this could also be developed in future studies. Another limitation may be the self-rated data. In some studies, participants tend to overrate time spent in physical activity per week . This is a minor problem, however, in this type of study, where the aim of this variable is mostly to describe who the participants are. In this study it also does not matter that the participants are a quite homogeneous group, because the focus is on ongoing initiatives and how these could be organized, and the participants in them are the way they are. Of course, we know that these are very healthy older adults with good preconditions to participate in sport and physical activity. --- Conclusion Individual-level recommendations for how much physical activity people in different ages should perform to gain health benefits are not enough to get older adults to participate in different sport and PA initiatives. In this study, we have proposed some recommendations for how organizations could organize activities to suit as many people as possible for as long as possible. When considering recommendations like these, with a specific focus on older adults, we conclude that older adults want similar outcomes when participating in sport and physical activity, but that they seek this in different ways. To attract as many older adults as possible, organizations should accordingly work with lowering the threshold into sports and physical activity, as well as within and between different sports and physical activities, in order to raise the threshold to dropping out of sport and physical activity . provided their written informed consent to participate in this study. --- Data availability statement The datasets presented in this article are not readily available because https://doi.org/10.5878/h8qw-ax80. Requests to access the datasets should be directed to [email protected]. --- Ethics statement Ethical approval was granted by the Swedish Ethical Review Authority . The patients/participants --- --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
There is a common understanding that sport and physical activity can be important to address healthy aging. There are individual-level recommendations about how much physical activity people of different ages should engage in to gain health benefits, but at the same time there are no recommendations for how organizations should organize physical activities to suit as many people as possible for as long as possible. The purpose of this study was to explore the characteristics of sport and physical activity initiatives that older adults participate in. Different ongoing sport and physical activity initiatives that involve older adults were investigated regarding their focus, organization, intensity and organizer, and in relation to their costs, booking opportunities and recruitment. The study was conducted with a cross-sectional design using the Salutogenic Physical Activity Health Resources Questionnaire (SPAHRQ). The study included 27 different initiatives with 372 participants (60% women) ranging from 60 to 96 years of age. A health-promoting, salutogenic settings-based approach, and specifically the concepts drop-in, drop-through and drop-over were used in discussing recommendations for the organization of sport and physical activity for older adults. The main findings were that who organizes the sport and physical activity initiative seems to affect the characteristics of how it is organized and what characterizes the participants in it. Despite the differing characters of sport and physical activity initiatives, the majority of older adults are recruited by internal contacts like friends and family. Which older adults participate in which initiatives is explained mostly by the age and gender of the participants. In conclusion, to attract as many older adults as possible, organizations should work with lowering the thresholds, as well as within and between, organizations, and raise the threshold for dropping out of sports and physical activity.
Background Non-communicable diseases such as ischemic heart disease, stroke, and diabetes have been on the rise in the Caribbean region from 1990-2010. According to the Global Burden of Disease 2010 , the median % change in disease burden attributable to diabetes increased 47 % during the same period [1,2]. The burden of disease in the Caribbean is increasingly shifting from communicable to non-communicable, chronic diseases [3]. A recent systematic review of social determinants of diabetes risk factors and control found that women across the Caribbean region were more likely to have diabetes, be obese and less physically active than men [4]. Based on GBD 2010 results, having a BMI ≥ 25 is the single greatest risk factor associated with disease burden in Barbados, contributing to over 11 % of total disability-adjusted life years [5]. According to the Health of the Nation Study, a population-based cross-sectional study conducted from 2012-2013, 74.2 % of women aged 25 and over are overweight or obese compared to 57.5 % of men [6]. The proportion of women and men who are obese varies dramatically, with obesity prevalence "almost twice as high in women than in men " [6]. The Health of the Nation study also reports prevalence of central obesity, which is more strongly associated with diseases such as diabetes and cardiovascular conditions. The prevalence of central obesity among women aged 25 and over is three times higher than in men [6]. Taken together, these data suggest that a deeper understanding of the determinants of this high gender-specific obesity prevalence may be important in curbing a growing public health concern. Physical inactivity was ranked fifth in the GBD list of risk factors that contribute to disease burden in Barbados, above both alcohol use and tobacco [7]. Based on objectively measured physical activity levels reported as part of the Health of the Nation study, 90.5 % of women aged 25-54 are physically inactive according to WHO minimum recommendations, compared to 58.9 % of men aged 25-54 [6]. Moderate amounts of physical activity have been shown to help maintain weight and prevent weight gain [8], and physical activity has been shown to have a protective effect on a wide range of noncommunicable diseases [9,10]. There are many evaluations of physical activity interventions in the United States, Canada, Europe, Australia and New Zealand [11][12][13][14]. However, little is known about the barriers and facilitators of physical activity in low resourced countries in Latin America and the Caribbean [15][16][17][18][19][20][21]. There have been numerous studies on the barriers and facilitators to physical activity among Afro-Caribbean populations in the Diaspora [22][23][24] but research about physical activity in the Caribbean is limited [25][26][27]. This work contributes to filling the gap. Qualitative research can add insights into the nuanced or competing influences that women may face. The combination of semi-structured interviews with participant observation , adds methodological rigor to qualitative inquiry of physical activity. Opportunities include comparing 'what people say with what they do', gathering contextual data , and revisiting previous interview comments and conversations in repeat visits [28]. A better understanding of women's experiences may contribute to the design of messages and interventions that are more likely to be effective at increasing physical activity levels. This work aims to identify some of the barriers to physical activity currently faced by overweight and obese women in Barbados, and explore factors that facilitate physical activity successfully among this group. --- Methods The research design is a qualitative case study, based on the Grounded Theory principles outlined by Strauss and Corbin. As an explanatory study of an under-researched topic, setting and population group, the research was conducted in an ongoing and iterative basis to carefully explore the emergent data for explanatory insights [29,30]. Data collection occurred from January to August 2014. --- Participants Sampling Seventeen female participants were recruited into the study. The purposeful sample included women between 25 and 35 years of age, having measured a BMI greater than or equal to 25, and who were not pregnant [28]. The relatively young age and narrow age band were chosen to match the primary investigator's age and it was agreed that a closeness in age between the researcher and women included in the study may positively influence the comfort and candidness of the interviews and participant observation. That said, the primary investigator was an outsider to the setting and this may have still influenced data collection in terms of the information women were comfortable sharing, the topics discussed and the level of trust developed between the women and the primary investigator. Meeting the participants several times over a period of time helped to establish rapport and address potential concerns of the participating women. The sample was limited to women with a BMI greater than or equal to 25 to focus on a homogenous targeted sample, while allowing for variety in experiences. This focus would allow insight into whether and in what ways there may be opportunities for physical activity interventions to address issues of overweight and obesity. Pregnant women were excluded from the sample because of the assumption that physical activity patterns and experiences may be quite different during pregnancy. Although data on physical activity levels were collected as part of the Health of the Nation study, these data were not available at the time of recruitment and therefore the activity levels of women in the sample were not considered for analysis. --- Recruitment Following Grounded Theory principles, participants were recruited, visited, and their data analyzed through an iterative process, and recruitment ended when the team agreed that analytical saturation has been reached. To reduce the time between the initial recruitment phone call and the first interview, recruitment was staggered and done in batches of 4-5 women at a time. Based on our study design, we intended to recruit up to 20 women until saturation had been reached; this small number of participants was chosen with the aim to visit them repeatedly for more in-depth exploration of their experiences. All but one participant had been part of the Health of the Nation Study between 2012 and 2013 and at the time had indicated that they were willing to be contacted for future recruitment. The Health of the Nation study is a population-based cross-sectional study to define the burden of diabetes, CVD and associated risk factors by socio-economic status in the Barbados adult population [6]. Based on our sampling criteria, 53 women were eligible to participate, but not all eligible women were contacted. Of 36 women called, 12 could not be contacted due to restricted incoming calls, changed phone numbers or failure to respond after three messages. Of the remaining 24 women who were successfully contacted, all women agreed to participate in the study with the exception of one woman who declined. One woman was pregnant and therefore ineligible to participate. Once saturation was reached at 17 participants, the remaining eligible participants were not interviewed. --- Pilot To pilot the semi-structured survey instrument, one woman who was an acquaintance of the primary investigator and with whom rapport had already been established, was recruited from outside the Health of the Nation sampling frame in an effort to gain candid feedback about the survey instrument The pilot phase consisted of testing the semi-structured survey instrument for clarity and timeliness with this woman, after which it was decided that no further pilot testing was necessary as the instrument was clear and not overly time-consuming. Since the instrument did not change after the pilot and the woman who participated in the pilot met all of the other study requirements, her data has been included in the study because it enriched the data collected. --- Participant characteristics The final 17 participants had an average BMI of 33 , and represented 9 of the 11 total parishes in Barbados. Ten participants had completed college or higher and 14 were employed. Twelve women had children, of which five had one child, six had two children, and one woman had three children. Eight women were married. All women were of Afro-Caribbean descent. Further characteristics of the study participants are shown in Table 1. --- Procedure Interviews Eligible participants were contacted by phone, and an initial meeting was set up at a location of their choosing . During this meeting, the basic aims of the study were discussed, and written informed consent obtained. Then, a semi-structured interview was conducted. The initial questions were designed to build rapport, and focused on family and daily activities. These included questions such as "Think back to yesterday. Can you walk me through your day? What time did you wake up? What did you do before breakfast?" Subsequent questions focused on transportation, leisure time, opinion leaders, social support, and media exposure. This section of the interview included questions such as "How did you get to [previously mentioned location]? What are some other ways that you get around? Who, if anyone, do you turn to for an opinion Participant observations: Following the initial interview, plans were made with each participant for a subsequent unstructured meeting based on the activities discussed during the interview. Twelve of the seventeen women participated in this second stage. Five women did not participate due to lack of time or lack of interest. Of the women who did participate, two were met with on multiple occasions , two were met with twice, and the remaining 8 were met with once each. Activities included attending a family picnic, attending church, going to work together, going to parties, golfing, swimming, and attending various dance classes, going to the gym, walking to a childcare center, and walking home. These activities were selected based on activities discussed during the initial interview, or at the suggestion of the women themselves. As a result, the activities considered during participant observation varied widely. This was considered a strength of the methods, since physical activity is not limited to traditional exercise activities, and we wanted to capture both activity that occurs in non-exercise contexts , as well as attitudes and perceptions about activity that may arise in non-active contexts . Field visits varied from one hour to six hours. A total of more than 50 hours of participant observation data collection were accumulated, and all observations were recorded as field notes. The first author , a qualitatively trained female researcher, conducted all data collection, supervised by the second author and the senior author , both experienced qualitative researchers. Ethics approval was gained from the Institutional Review Board of the University of the West Indies, Cave Hill, and the Ministry of Health, Barbados. --- Analysis All interviews were transcribed verbatim, field notes typed up from handwritten notes and all data analyzed using Dedoose software. Codes were developed inductively from transcripts and field notes. An interim analysis was conducted after meeting with the first 10 participants. Quotations were clustered around broader themes and these themes were merged or altered where appropriate. Data collection continued until it was felt that saturation had been reached. All analysis was primarily conducted by the first author . Since the nature of this research was very embedded, particularly with the participant observation component, it was not advantageous or necessary to use multiple coders. However, to ensure rigor, analysis was continuously and discursively checked by the second author , a locally based experienced qualitative researcher, and the senior author , and any agreement over themes reached by consensus. Additionally, a public health doctoral candidate with expertise in physical activity was consulted independently. Themes were categorized into barriers and facilitators to physical activity. Finally, all 17 participants were revisited for member-checking, and findings were discussed and recorded. These recordings were used to update and refine results. In this study, we use the term "physical activity" to refer to any movement that requires energy expenditure, and use the term "exercise" as a sub-category of physical activity that refer to activity done specifically to maintain or improve physical fitness in a structured setting. We use the term "active living" to refer to physical activity that is incorporated into daily life including commuting, at work, at home, and recreationally. --- Results Results are presented in terms of barriers and facilitators according to broad themes and supporting evidence. --- Barriers Barriers are subdivided into three broad categories: social, structural, and individual. --- Social: Gender norms limit opportunities for exercise Physical activity behavior seemed to be very genderspecific in Barbados. Women rarely reported and were rarely seen by the researcher exercising with men. Of the 10 participants that described ever doing some kind of activity during their leisure time, 9 were either alone or with female-only groups. Of the 5 women observed engaging in activity, none of them involved male friends or partners, and only one was a co-ed exercise class. During follow-up visits all but one woman in the study agreed that men and women were not active together. In contrast, women reported discussing exercise with other women and joining all-female exercise groups. --- Me and my girlfriend we talk about it [physical activity] practically every day because she goes to a different gym to me […] So she would say what you do at gym today and I would say this and she would say yesterday I almost get killed! Asked about who they last heard talking about physical activity, some women explained that they talked with female friends about being active regularly. For these women, peer encouragement was reported to be a strong motivator. However, surprisingly some women described pulling away from female friends and acquaintances because of a perception that "it's not good to have too many female friends" . Some women described a pervasive culture of distrust, explaining that women were often not genuinely supportive of one another. When probed during follow up visits, most women agreed that this dynamic was pervasive. One woman disagreed strongly. This widespread experience of distancing from female peers may have reduced the effect of peer encouragement for physical activity. Out of the 6 women who described avoiding female peers without being prompted, 5 reported no leisuretime activity. Several of these women agreed that they would be more likely to be active if they had a female friend who would invite them to an exercise class or on a walk. Pervasive gender roles also limited women's opportunities to exercise in terms of their social responsibility as mothers and often household heads. Of the 12 women with children in this study, 4 women were single mothers. Some women had support from their extended family, while others did not. Several women described child rearing responsibilities as one of the primary reasons why they were not active. One single mother who was able to make exercise a priority described this dynamic: Some women don't have help -the children have dads that don't help or other family members so that's why too. They would have to put the children first. But I have help, luckily. That's why I decided to start doing something [going to the gym]. --- I guess in Other women mentioned the importance of having support from family in child rearing. Several women emphasized how prevalent single parent families were in Barbados, particularly single mothers. While spending participant observation time with one single mom at her workplace, she and a male colleague debated why she was not able to make time to exercise. She explained that with two kids she did not have the time or resources to join a gym, but he insisted that kids were not to be blamed and that she needed to make sacrifices in order to address her obesity. The exchange captured both social norms about a woman's role as a sacrificial mother, and little recognition of the social responsibilities and pressures of single mothers. Of note, this man and woman had the same job and the same professional obligations; the man had a child that did not live with him. --- Structural: Socio-economic factors limit opportunities for active living Participants reported experiencing a variety of socioeconomic constraints, which were also observed during interviews and participant observation sessions. First, some houses were too small to allow for exercising at home. These homes were typically chattel houses, which are small wooden houses that were originally used during the plantation period in Barbados [31]. Some women described being active at home and doing a range of activities from Zumba® DVDs to light weight lifting and floor exercises to walking on a treadmill. However, for women living in smaller chattel houses, being active at home was observed not to be a viable possibility. During follow up visits, these women confirmed that it was difficult to engage in exercises at home. Second, there was a perceived lack of access to convenient and affordable group exercise opportunities. For example, one woman said that she struggled to be active, explaining: I would like to find a gym that is cheap that I could get a personal trainer. Ain't cheap! Man, tell me is 60 dollars a session! That is 60 dollars for one session one 45 minute session! Not even an hour. Most participants were not aware of more affordable exercise options. This low awareness might be explained by the high visibilityboth physically and in social mediaof more expensive gyms that were described to be more effective. A few women highlighted that they did not seek out more affordable options because they did not consider them equally effective alternatives. Third, opportunities for active commuting were limited in Barbados. Women who lived and worked in Bridgetown or other major commerce areas were able to walk to nearby stores, childcare facilities, or work. However, women who lived elsewhere typically were too far from these establishments to walk. Instead, most women drove or were driven by their partners. A few women described occasionally utilizing public transit. One woman described the barriers to active commuting: Sometimes the walk is be good you know exercise but if I have my car I wouldn't walk at all only when I don't have do I walk cause everything closer in town [Bridgetown] that ya could walk to instead of wasting the gas but as for out here [St. Philip]… the closest shop there … nah… now that is daytime no way! Ain't walking. Too hot! During the participant observation sessions, two women were observed walking as part of their commute. Both lived in Bridgetown. In participant observation of a morning spent with Maria , she took her daughter to daycare by bus and walked back. She carried her two-year old daughter for a while, commenting on how heavy she was. We walked along some pretty quiet roads until we turned into the nursery. On the way back she explained that normally she would walk with headphones as this was motivating and fun. The walk home took 25-30 minutes. Motivation was clearly as important as the physical opportunity to walk for Maria. During this walk, Maria described that her other friends would never walk like she does. She explained that her friends would not walk because they all had cars and driving was more convenient, or they were lazy. Since so many women reported and were observed to have access to cars, it seems that the incentive for active commuting is low. --- Individual: Health is not a major motivation for physical activity Interviews also explored broad notions of health and women were asked if health was a motivation for anything they did. Without being asked, every woman in this study reported knowing someone with diabetes. While describing their motivations for pursuing physical activity, some women explained that witnessing friends and family with long term chronic conditions motivated them to take control of their own health as much as possible. One woman summarized this, saying "it's really time for me to put things in orderif I still get diabetes when I'm skinny well that's just life but it wouldn't be because it's my fault" . However, an equal number of other women spontaneously explained during initial interviews that the high prevalence of diseases like diabetes had led to have a lack of perceived self-efficacy around preventing long-term health conditions. One woman commented: I do a lot of things that jeopardize the health but to me, regardless if you do or don't do, things still happen […] Sometimes you will see a person don't smoke don't drink is still see them develop well everybody got diabetes so yeah but to me it don't matter what you do or don't to bring it on. Things just happen… During follow-up discussions, 8 women agreed that some women do adopt this mentality. One woman explained that Bajans [Barbadians] were known "as being laid back people […] we don't rush or anything like that" . She went on to assert that Bajan culture was characterized by the following belief: What comes by is what's supposed to happen. We don't see a lot of initiative or someone wanting to do something different. [For example] none of my friends wanted to exercise […] it never happened I could never find someone to do it [be active] with me. For this woman, there was a clear link between this laid-back mentality and lower levels of physical activity. Moreover, during initial interviews, some women explained that nutrition was a substitute for being active. They focused on healthy nutrition when they could not or chose not to be active. When asked about this during follow up visits, many women agreed that nutrition was perceived as a substitute for physical activity, and a few women described it as a more effective strategy for weight loss than being physically active. One participant summarized both of these views, saying: I lacking in that area of exercise I try to make it up in how I treat my body what I put inside my body for as I see all the girls walking every evening and they look no smaller! Year now they walking and all of them big so and they walking everyday! But they ain't going nowhere. Because when you see them at lunch and you see what they eating they're wasting time walking. The dual perceptions that healthy nutrition was a substitute for being physically active and that nutrition was more effective for achieving weight loss seemed to act as barriers to engaging in physical activity. One woman explained her view: To me it's like nutrition -It's like the biggest part in terms of you losing weight in terms of self control discipline like… how it's like everyone thinks exercising like the main thing but I think it's like the way that we eat that's like more important because I ain't say like for myself like sometimes when I take certain foods I can see myself my body feels better you know so just take nutrition it's like the main key think like discipline has to start with that first. Another woman commented that there was an "idea that for some people they can just cut out bread and lose weightso they don't have to exercise" . Almost every woman in the study identified weight loss as the primary motivation for being active. No one discussed weight maintenance as a possible benefit or motivation associated with physical activity. Only two women identified health or fitness as a primary motivation. When asked about this, one woman explained: You go to the doctor they gone tell you to lose weightthey never tell you to get healthy you know! They actually tell you to lose weight. So […] your goal is to lose pounds, it's not to get healthy. With weight loss as the primary goal, many women apparently saw healthy nutrition as a potential substitute for being physically active. Extreme weight loss practices, such as diet clinics and diet pills, were also brought up by a few women. For example, one woman talked about attending a free consultation at a diet clinic: They say it's like 1500 dollars […] You could lose up to 30 pounds once you stay strictly to their diet […] Yeah you got to weight the food on a scale Melissa seemed very excited about this diet clinic and spontaneously brought it up several times over multiple visits. Despite being very conscious of saving money and not spending much on herself, she was willing to make this a priority and commented that she was starting to save for it. Another woman discussed having tried diet pills in the past, explaining: It was very expensive but it used to work but I find out whenever I take them my heart used to race a lot […] so I stopped taking them I never took anything since that […] all they [diet pills] do is destroy you as you can see the two old ladies that we lost the other day from taking them. So yes you get results you get small and stuff but then afterwards the tablets and stuff doing other things to your body. While physical activity was seen as one way to achieve weight loss, many women reported seeing healthy nutrition, dieting, and even diet pills as possible alternatives to being active. --- Facilitators Despite these barriers, a subset of women reported being active regularly, and a series of participant observations involved physical activity. Discussions during interviews and participant observations revealed a set of factors that seem to facilitate physical activity among these women. These facilitators were typically described while answering questions such as "What did you do yesterday?" and "What did you do last weekend?" During discussions of these activities, the following facilitators were spontaneously described by a subset of women. --- Social: Support & pressure as a motivator to stay active In sustained exercise classes, most people seemed to know each other and teasing was a big part of the social experience. One woman who went to the gym four times a week described her reasons for going: Going to the gym the motivation is, well obviously it would be generally to lose weight, but going by the gym is relatively small so you know everybody that is there so it's kind of a family type atmosphere. And the guy that operates it he is funny and interactive […laughs] It doesn't seem that horrible… Initially! [Laughs] Guilt around missing classes and fear of missing out were both reported to be strong motivations for consistent attendance. On a small island, several women explained that it was very likely that one would run into someone from an exercise group on the street, making social pressure more tangible. As Alexis went on to summarize, "It's Barbados. It's so small somebody always knows somebody that knows somebody." She went onto explain: I probably would pass somebody from my gym somewhere on the streets [… It's] motivational in the sense that if you don't go […to the gym] and pass a girl that I haven't seen in a while 'hey why I don't see you in the gym? What's going on with you?' and I guess guilt people into coming back. So yeah it's motivation. All of the women who participated in group exercise classes described experiencing this dynamic. In addition, Whatsapp groups comprised of women in the same exercise class could make this social pressure and social support even stronger. Whatsapp is a mobile-based application that was widely used in Barbados and functions in a similar way to traditional text messaging services. A Whatsapp group is analogous to a group text, and allows members who were invited into the group to exchange messages in a common forum or thread. One woman described a Whatsapp group amongst her Zumba® classmates: I get support from friends because umm… if you going we have a chat so if you are going might ask 'You going to Zumba® tonight?' Even if you thinking about going and you saying well I got this here to do[…] them's encourage you to go like you's feel alright they going so I'm going. There seemed to be a camaraderie between classmates and trainers as well. One woman recounted missing a day at her gym after Kadooment, a national carnival-like festival. Her trainer playfully messaged her saying "What, are you still drunk?" She quickly promised to be back the following day. --- Structural: Access to opportunities for active living do exist Many women spontaneously reported being highly aware of the ways they engaged in active living outside of traditional exercise. Some women described a variety of strategies, including walking, dancing and active jobs as ways that they were active regularly. While not all women perceived access to opportunities for physical activity, based on observations some women did encounter structures that enabled physical activity. While opportunities for active commuting seemed limited, interviews and participant observation revealed that most women could walk in their neighborhoods or easily access spaces to walk. Walking was regarded as flexible and free. For one woman, walking was the most convenient form of activity because she could squeeze it into an otherwise busy day. She described driving her son to track practice, and explained: Instead of sitting inside the car for the two to three hours I decide just to walk. It's calming the headphones in I listening to on the radio and… get time to reflect on the day and you know time to wind down […] it's like good for your mental let the day go and relax and reflect. Another woman described two different kinds of walks: Those walks are not exercise walks those walks are walks of leisure ahhhhsigh -breathing you know like that's what my walks are. Walks to clear your mind free yourselfexercise walking it would be like early in the morning but I ain't do that for a long time. For the women who did describe walking in their leisure time, two out of the three did it primarily to relax. For these women, exercise was not the main motivation behind these kinds of walks. Instead, reducing stress and relaxation were reported as being important motivators for sustained walking. Other women discussed dancing when asked about physical activity, and several additional women were observed dancing during the participant observation sessions as well. Women discussed many available spaces for dancing, and dancing was often mentioned as a preferred form of recreation. Again, exercise was not the main motivation, rather women saw this kind of dancing as fun and social. However, the women who talked about dancing were aware that it was highly active. When asked about physical activity, one woman responded: Dancing. Tha's the only physical activity -I don't do the exercises […] I dance so much I feel like I burn a lot of calories. Ya's be sweating! I sweating down boy! While some women reported active living as recreation and entertainment, others described how they either had active jobs or found ways to incorporate physical activity into their workdays. For example, Melissa was very aware of the activity involved in her job, and viewed it as a major benefit of the position. She described her dissatisfaction with various previous jobs: I worked as […] a cashier at a supermarket until 2009 and you know a cashier sits down ain't much activity in that and then in 2009 to 2011 I did secretarial workso that's even worse! Cause […] when you're sitting down and working all day sitting down Facebookyou know after you ya know finish your workbut then […] I got this new job that I totally love cause since I really can't get the exercise that I want to put in, I think it give me a little moderate […] up and down. Women with more sedentary jobs described seeking out opportunities to be active as well. For example, Dawn, an accountant, explained how she made time to walk throughout her day: Like if I don't have anything to do at my desk I's just walk about and shout people that kinda stuff […] my office is split so the other part of my office is far if I have to get something signed I have to walk to get it signed. Like… about seven minutes. Rebecca, who worked at an office, described how she was proactive about walking also: I push even when I'm at work I carry along my flat shoes and I push myself across the office I like if anybody want anything I offer to go for it just to get to and fro. Some women also found affordable and convenient group exercise options. For example, one woman attended a Zumba® class that was taught in her neighborhood and cost BB$3 [US$1.50] for a 90-minute session. This was quite an exceptional community-led effort, but demonstrates that it was possible to create and sustain affordable and accessible group exercise classes. She explained: If I had a reasonable gym close to me, that probably on evenings before I go I could go there and then come home but the gyms near my side are like 300 and something [BB] dollars a month 400 and something [BB] dollars a month […] and this actual Zumba® you go to we do it 3 [BB] dollars a day which is 9 [BB] dollars basically a week for three times which to be honest the work out we do is basically we could just call it a week. Another woman described exercising at a backyard gym in Bridgetown, which cost BB$10 [US$5] per week. Reflecting the range in socio-economic circumstance in the participants, there was a wide range in what women considered affordable. Another woman attended a different Zumba® class for BB$18/session [US$ 9/session], and another participant consistently paid BB$180 [US$90] for six pole dancing classes. Although cost was both a real and perceived barrier, there were some options that were more affordable for women across the socioeconomic range. --- Individual: Positive experiences act as motivators Even when health and fitness were not reported as the primary motivations for initiating physical activity, women who joined exercise groups that were fun and that they attended consistently described seeing real health benefits. Women talked about experiencing less shortness of breath, decreased knee and ankle pain and increased cardio endurance. One participant described being motivated by an improvement in an old injury: When I was younger I twisted my ankle so I always used to have to wear ankle braces but I found that once I got heavier it would tend to roll out more and I remember [… ] anytime I do anything like walking or hiking I'm going to have to wear this brace […] Now that I'm working out sometimes I'm like oh crap I don't have the brace -! [Laughs] Because I haven't rolled it for that long, maybe like two years. It's a huge difference. While these health-related benefits were not part of her initial motivation, this participant went on to explain that seeing this change has motivated her to continue being active. --- Discussion This qualitative study with Afro-Caribbean women explored barriers and potential motivators to physical activity. First, social gender norms seemed to restrict how and with whom women chose to be active. Most women reported only exercising with other women, lacking a significant group of female peers for encouragement, and facing time and financial constraints related to childrearing responsibilities, particularly as single mothers. Second, women faced a variety of barriers related to socioeconomic factors. Cramped housing limited indoor exercise opportunities, and organized exercise classes and gyms were generally perceived to be very expensive by women with limited disposable income. Interestingly, despite varied levels of income most women had access to a car, so incentives for active commuting were limited. Finally, some women perceived chronic disease as random and inevitable, and were not convinced of the link between being active and long-term health. Many women highlighted the benefit of weight-loss over other health concerns. Some women reported focusing their efforts on healthy nutrition as a substitute for physical activity. It was not assumed at the outset of the study that the participants, who were all overweight and obese, were physically inactive. Some women indeed discussed and were observed to be active regularly. For these women, several factors seemed to encourage consistent activity. First, social support and pressure, which were perceived to be heightened on a small island, provided additional motivation for remaining consistently active. Second, some women discussed walking for relaxation, and walking was observed to be an accessible form of physical activity for most women. A subset of women as also able to find exercise groups that were affordable, across a range of socioeconomic levels. Third, while health was rarely discussed as a primary motivation for being active, women reported seeing distinct health benefits to regularly engaging in activity, and positive experiences, for example improved fitness, were additional motivation to continue. The study complements findings from qualitative research on women's perceptions of and barriers around physical activity predominantly set in North-American and European settings, but also highlights complexities that may be more pronounced in lower resourced settings such as the Caribbean in which qualitative physical activity studies are still missing [32,33]. Several studies reported weight loss as a strong motivator for engaging in physical activity, greater or equal to the motivation of health benefits [34,35]. However, dieting was preferred by some of our participants over physical activity as an effective weight loss strategy. Their experience mirrors scientific evidence that suggests that a high amount of physical activity seems to be required for effective weight loss [36][37][38][39]. One consensus panel of physical activity experts suggested that "prevention of weight regain in formerly obese individuals requires 60-90 minutes of moderate intensity activity" [37]. Another intervention study found significant long term weight loss was achieved in a group that was instructed to walk around 75 minutes per day as compared to the standard recommendation of 30 minutes per day [38]. In face of competing priorities in these women's lives, perceived quicker weight loss strategies trump physical activity. A more sustainable motivator than weight loss ambitions seems to be social support, in particular the role of female friends as exercise partners. Gender differences in social support are described elsewhere, with girls/women appreciating warmth, encouragement and social exchange from their peers while boys/men highlight exchange of skills, status and information [40,41]. In our study, women echoed the need for social support from their peers. A subset of women, however, described isolation from their female peers in adulthood as a significant barrier to sustained physical activity. Programs that promote community-building and focus on developing and maintaining relationships amongst women may be helpful at reducing the social isolation some women described, and may ultimately support active living. In particular, low-cost community-based exercise classes or walking groups have the potential to address some of the barriers to being active while amplifying some of the facilitators identified in this study, such as social support. While a low-cost Zumba® class was identified, it was also discussed as being quite exceptional. Finding ways to support the development of additional low-cost dancing classes throughout the island may be one way to increase access to affordable, women-friendly exercise opportunities. Social responsibilities were also reported as strong barriers to physical activity in women elsewhere [42]. Time and resource constraints related to child care, work and household duties may be particularly linked to structural disadvantage [42]. In the setting of this study, single mothers, who were household heads, particularly faced this double burden and find it difficult to incorporate physical activity into their daily lives. Barbadosand the Caribbean region more widelyhas one of the highest rates of single-mother families in the world [43,44]. Of course single motherhood and the double burden of household and work responsibilities are common in other settings, in particular in lower income populations. Research suggests that active livingthe combination of physical activity derived from travel, work, household and leisure activitiesis therefore a relevant and applicable concept for disadvantaged women who have less time for structured exercise but may nonetheless be physically active [42]. A case in point is active travel, which is more commonly practiced amongst disadvantaged women [42,45]. In the Barbadian setting, however, we found in our sample that car ownership or at least access to car use was widespread, despite the relatively low disposable income in many of our participants. Although the physical environment could be made to facilitate activity morein particular infrastructural improvements to encourage active travel, there are currently safe and affordable options available, such as walking locally or using the many public parks and beaches that are generally safe spaces. This is in contrast to findings from other studies primarily based in high resourced countriesbut often deprived and therefore unsafeurban centers [42,46,47]. --- Strengths and limitations Including a participant observation component greatly enriched the study's findings. For example, through participant observation a variety of locally-led physical activity initiatives were identified. In addition, spending time with women in a variety of contexts allowed for insight into social and structural barriers that were not reported but observed consistently and confirmed during follow-up visits. This study also faced several limitations. In-depth participant observations were made with 12 of the 17 women in this study. Women who did not participate may have been systematically differentbusier or less active, for example in ways that may be related to the study objectives. The study focused specifically on women, but an investigation of male perceptions, attitudes and behaviors may help to highlight gender-specific determinants of differing obesity rates. In addition, the sampling frame was limited. The first limitation was to only include women ages 25-35. However, younger and older women may have very different experiences and motivations. Teenage girls typically have very low physical activity levels, but we did not have access to this age group based on the age range of the Health of the Nation study [6]. Equally, older women with different responsibilities may face different barriers and hold different perception regarding healthy living. However we excluded older women due to the primary investigator's age and our assumption that sharing a proximity in age with the women in this study would affect the comfort and candidness of interviews. The sample was also limited to overweight and obese women, to investigate the current relationship between these women and physical activity and possibly inform future physical activity interventions targeting this group. --- Conclusions The findings of this study suggest that gender-specific social norms and structural circumstance are important determinants of female physical activity in overweight and obese women. Future public health interventions could focus on fostering peer support, either in terms of exercise classes, buddy-schemes or more unstructured walking groups. Affordable and accessible group exercise classes, for example locally-led low-cost and 'femalefriendly' Zumba® classes, are feasible within a Caribbean context and successful models have the potential to be replicated, particularly if they were subsidized to make them more accessible. This study also supports a general emphasis on active living as a population-based strategy towards increased physical activity that communicates to women that active lifestyles can be achieved while working, and through recreation such as dancing. --- Competing interests The authors declare no competing interests. --- Author' contributions MA conceived of the study, and carried out all primary data collection, transcription and coding. MMM provided oversight during data collection and contributed to interim and final data interpretation and manuscript editing. CG provided oversight during study design and data collection, participated in data interpretation, drafted sections of the manuscript and edited the manuscript iteratively. All authors read and approved the final manuscript. Author's Information MA completed this research while on a Fulbright Scholarship, a program of the United States Department of State Bureau of Educational and Cultural Affairs.
Background: The proportion of obese women is nearly twice the proportion of obese men in Barbados, and physical inactivity may be a partial determinant. Using qualitative interviews and 'semi-structured' participant observation, the aim of this study was to identify modifiable barriers to physical activity and to explore the factors that facilitate physical activity amongst overweight and obese women in this low-resourced setting. Methods: Seventeen women aged 25 to 35 years with a BMI ≥25, purposefully sampled from a population-based cross-sectional study conducted in Barbados, were recruited in 2014 to participate in in-depth semi-structured interviews. Twelve of these women participated in one or more additional participant observation sessions in which the researcher joined and observed a routine activity chosen by the participant. More than 50 hours of participant observation data collection were accumulated and documented in field notes. Thematic content analysis was performed on transcribed interviews and field notes using the software Dedoose. Results: Social, structural and individual barriers to physical activity were identified. Social factors related to gender norms and expectations. Women tended to be active with their female friends rather than partners or male peers, and reported peer support but also alienation. Being active also competed with family responsibilities and expectations. Structural barriers included few opportunities for active commuting, limited indoor space for exercise in the home, and low perceived access to convenient and affordable exercise classes. Several successful strategies associated with sustained activity were observed, including walking and highly social, low-cost exercise groups. Individual barriers related to healthy living strategies included perceptions about chronic disease and viewing physical activity as a possible strategy for desired weight loss but less effective than dieting. Conclusions: It is important to understand why women face barriers to physical activity, particularly in low-resourced settings, and to investigate how this could be addressed. This study highlights the role that gender norms and health beliefs play in shaping experiences of physical activity. In addition, structural barriers reflect a mix of resource-scarce and resource-rich factors which are likely to be seen in a wide variety of developing contexts.
identification. §, ¶ Non-Hispanic whites were used as a comparison group because they have the second-highest suicide rate, but concentrated among different age groups than AI/AN, allowing for comparisons that might reveal unique contributors to suicide above general risk factors. Rural-Urban Commuting Area codes were used to classify geographic areas into metropolitan and nonmetropolitan categories.** Demographics, incident characteristics, and precipitating circumstances were examined by race/ethnicity using chi-squared tests. Significant chi-squared results were further examined using logistic regression, controlling for age and sex. From 2003 to 2014, a total of 1,531 suicides among AI/ AN and 103,986 among whites were collected in NVDRS . More than one third of AI/AN suicides § https://www.cdc.gov/violenceprevention/pdf/nvdrs_web_codingmanual.pdf. ¶ Information on race and ethnicity are recorded as separate items in NVDRS consistent with U.S. Department of Health and Human Services and Office of Management and Budget standards for race/ethnicity categorization. HHS guidance on race/ethnicity is available at https://aspe.hhs.gov/datacncl/ standards/ACA/4302/index.shtml. ** ZIP Code Rural-Urban Commuting Area codes were used to determine whether decedents resided in nonmetropolitan versus metropolitan areas. RUCA codes measure daily commuting flows, population density, and urbanization levels to classify sub-county level geographic areas. Victim residential ZIP codes were dichotomized as "metro" and "nonmetro" . Descriptions of the RUCA classification codes 1-10 are available at https://www.ers.usda.gov/dataproducts/rural-urban-commuting-area-codes/documentation/. occurred among youths aged 10-24 years . In contrast, 11.1% of suicides among whites were in persons aged 10-24 years . More than two thirds of AI/AN decedents resided in nonmetropolitan areas, whereas the majority of white decedents resided in metropolitan areas . The largest proportion of both AI/AN and white decedents died by firearm , with hanging/ strangulation/suffocation being the next largest proportion . Circumstance information, obtained primarily through information provided by persons who knew the decedent as indicated in coroner/medical examiner reports and law enforcement reports, was known for 87.5% of AI/AN and 89.8% of white suicides . Although intimate partner problems were a common precipitating circumstance for both AI/AN and white decedents , AI/AN had significantly higher odds of experiencing this circumstance . Approximately two in 10 AI/AN suicides were preceded by an argument, compared with one in 10 white suicides . Compared with white decedents, AI/AN decedents had 2.4 times the odds of the suicide of a friend or family member affecting their death and 1.7 times the odds Abbreviations: AI/AN = non-Hispanic American Indian/Alaska Native; aOR = adjusted odds ratio; CI = confidence interval; white = non-Hispanic white. * Alaska, Colorado, Georgia, Kentucky, Maryland, Massachusetts, Michigan, New Jersey, New Mexico, North Carolina, Ohio, Oklahoma, Oregon, Rhode Island, South Carolina, Utah, Virginia, and Wisconsin. † Adjusted odds ratios measure the association between the decedent having the demographic or incident characteristic and the race of the decedent being AI/AN. Each adjusted odds ratio used white as the reference group and controlled for age group and sex. Therefore, odd ratios for age groups and sex are not presented. § Chi-squared test result for difference between AI/AN and white significant at p<0.05. ¶ ZIP Code Rural-Urban Commuting Area codes were used to determine whether a victim resided in a nonmetropolitan versus a metropolitan area. Victim residential ZIP codes were dichotomized as "metro" and "nonmetro" . Descriptions of the RUCA classifications codes 1-10 are available at https://www.ers.usda.gov/ data-products/rural-urban-commuting-area-codes/documentation/. ** No significant difference was found between AI/AN and white for this incident characteristic, therefore no measure of association was calculated. † † Statistical reliability criteria for logistic regression not met because cell frequencies were less than the required minimum. § § Includes suicides that occurred in a motor vehicle, street, highway, parking lot/garage, public transport, railroad tracks, or bridge. ¶ ¶ Includes suicides that occurred in a beach, river, field, or woods. *** Includes suicides that occurred in jail, prison, or supervised residential facility. † † † Includes suicides that occurred in industrial or construction sites or an abandoned house, building, or warehouse. of the nonsuicide death of a friend or family member affecting their death . Current diagnosed mental health problems , depressed mood , and current mental health treatment were less likely to be reported among AI/AN decedents than among white decedents . Substance abuse problems other than alcohol were not significantly different between AI/AN and white decedents; however, AI/AN decedents had 1.8 times the odds of a reported alcohol problem compared with white decedents . In addition, AI/AN decedents were more likely to have reportedly used alcohol in the hours before death and had more than twice the odds of a positive alcohol toxicology result . Among those tested, AI/AN decedents were significantly more likely to test positive for marijuana and amphetamines , and significantly less likely to test positive for antidepressants and opioids than were white decedents . --- Discussion Suicide rates among AI/AN are historically higher than those of the total U.S. population . The results of this study are consistent with previous research on risk factors for AI/AN suicidal behaviors and provide additional information on important circumstances and characteristics that precede suicide among AI/AN. Across many demographics, incident characteristics, and circumstances, AI/AN decedents were significantly different from whites. Approximately 70% of AI/AN decedents resided in nonmetropolitan areas, including rural settings, underscoring the importance of implementing suicide prevention strategies in rural AI/AN communities. Residential status can affect the circumstances surrounding suicide. For example, in this study AI/AN decedents had lower odds than did white decedents of having received a mental health diagnosis or mental health treatment, even when controlling for age and sex. Rural areas often have lower availability and use of mental health services because of provider shortages † † and social barriers, including stigma and lack of culturally competent care . To address provider shortages, financial incentives, such as loan forgiveness for mental health practitioners, represent one strategy that could be helpful in recruiting providers for rural and nonmetropolitan areas . The high rate of suicides among AI/AN youths highlights the need for early prevention. School-based † † https://datawarehouse.hrsa.gov/topics/shortageAreas.aspx. Abbreviations: AI/AN = non-Hispanic American Indian/Alaska Native; aOR = adjusted odds ratio; CI = confidence interval; NVDRS = National Violent Death Reporting System; white = non-Hispanic white. * Alaska, Colorado, Georgia, Kentucky, Maryland, Massachusetts, Michigan, New Jersey, New Mexico, North Carolina, Ohio, Oklahoma, Oregon, Rhode Island, South Carolina, Utah, Virginia, and Wisconsin. † Denominator includes only those suicides with ≥1 precipitating circumstances, unless otherwise noted. Sums of percentages in columns may exceed 100% because a suicide could have more than one precipitating circumstance. § Adjusted odds ratios measure the association between the decedent having the precipitating circumstance present and the race of the decedent being AI/AN. Each adjusted odds ratio used white as the reference group and controlled for age group and sex. ¶ Chi-squared test result for difference between AI/AN and white significant at p<0.05. ** Denominator includes all suicide decedents . † † Variable added to NVDRS in 2013; Denominator includes only decedents from 2013 and later with ≥1 known circumstances . § § No significant difference was found between AI/AN and white for this incident characteristic, therefore no measure of association was calculated. programs are able to reach a large number of AI/AN youths at high risk and could increase the availability of services for AI/AN in isolated nonmetropolitan areas . In addition, school-based programs that focus on individual life skills development and interpersonal social emotional learning programs to promote healthy relationships and conflict resolution might address the higher occurrence of intimate partner problems and arguments preceding AI/AN suicides . AI/AN decedents were more likely to have a friend's or family member's suicide contribute to their death. A previous study in one AI/AN tribe found that suicidal behavior occurred close in time and within tight social networks, suggesting suicide contagion . Given the observation that AI/AN had an elevated risk of their own suicide being linked to the suicide death of a loved one, community level prevention strategies, including programs that focus on postvention and safe reporting of suicides by the media , should be considered . Substance use is a recognized risk factor for suicidal behavior . A larger proportion of AI/AN decedents used alcohol before their suicide and had reported alcohol abuse problems. Previous studies have found that AI/AN youths aged 12-17 years have the highest rates of alcohol use among all racial/ethnic groups . Community-based programs to reduce excessive alcohol use and individual-level programs for persons at various risk levels, such as improved access to substance abuse treatment and life skills development programs for youths are necessary . Differences in the prevalence of alcohol use, interpersonal problems, and access to mental health treatment among AI/AN might be symptoms of disproportionate exposure to poverty, historical trauma, and other contexts of inequity and should not be viewed as inherent to AI/AN culture . The findings in this report are subject to at least five limitations. First, race of AI/AN decedents is often misclassified on death certificates resulting in underascertainment of AI/AN mortality, including suicide . Second, tribal affiliation is not collected in NVDRS. Thus, the heterogeneity of AI/AN tribes and the cultural differences between these communities could not be assessed, and results might not be generalizable across all AI/AN communities. Future studies are needed to identify Summary What is already known about this topic? American Indian/Alaska Natives have the highest rates of suicide of any racial/ethnic group in the United States. The rates of suicide in this population have been increasing since 2003. What is added by this report? Analysis of National Violent Death Reporting System data from 18 states showed AI/AN suicide decedents were younger and had higher odds of living in a nonmetropolitan area than did non-Hispanic whites who died by suicide. Suicide and nonsuicide deaths of friends and family, as well as alcohol use preceding death were associated with AI/AN decedents more often than non-Hispanic white decedents. What are the implications for public health practice? The high prevalence of suicide among the AI/AN population and the comparative differences in suicide circumstances among AI/AN decedents illustrate some of the disparities this population faces. Focused, yet comprehensive, suicide prevention and intervention efforts are needed that incorporate culturally relevant, evidence-based strategies at the individual, interpersonal, and community levels. risk and protective factors for suicide that might be unique to individual tribes or communities. Third, it was not possible to determine whether decedents resided on tribal reservations based on the available information. Fourth, mental health diagnoses and treatment status are based on informant reports and could be underreported for either or both groups. Finally, NVDRS data were available from 18 states as of the time of this report and are therefore not necessarily representative of suicides outside these areas. Prior research suggests comprehensive suicide prevention strategies designed to address the specific needs of an AI/AN Abbreviations: AI/AN = non-Hispanic American Indian/Alaska Native; aOR = adjusted odds ratio; CI = confidence interval; white = non-Hispanic white. * All substances included in the table had a chi-squared test results that was significant at p<0.05. Substances indicating no significant difference between AI/AN and white at p<0.05 were excluded from the table. † Alaska, Colorado, Georgia, Kentucky, Maryland, Massachusetts, Michigan, New Jersey, New Mexico, North Carolina, Ohio, Oklahoma, Oregon, Rhode Island, South Carolina, Utah, Virginia, and Wisconsin. § Adjusted odds ratios measure the association between the decedent having tested positive for the substance and the race of the decedent being AI/AN. The denominator was the number of decedents who were tested for each substance. Each adjusted odds ratio used white as the reference group and controlled for age group and sex. ¶ Statistical reliability criteria for logistic regression not met because cell frequencies were less than the required minimum. community are associated with reductions in suicide . The high prevalence of suicide among AI/AN and the comparative differences in suicide circumstances among this group are illustrative of the inequities faced by this population. This study highlights the importance of focused suicide prevention and intervention efforts that incorporate culturally relevant, evidence-based strategies at the individual, interpersonal, and community levels . --- Corresponding author: Rachel A. Leavitt, [email protected], 770-488-4270. --- Conflict of Interest No conflicts of interest were reported
Suicide disproportionately affects American Indians/Alaska Natives (AI/AN). The suicide rate among AI/AN has been increasing since 2003 (1), and in 2015, AI/AN suicide rates in the 18 states participating in the National Violent Death Reporting System (NVDRS) were 21.5 per 100,000, more than 3.5 times higher than those among racial/ethnic groups with the lowest rates.* To study completed suicides across all ages of AI/AN, NVDRS data collected from 2003 to 2014 were analyzed by comparing differences in suicide characteristics and circumstances between AI/AN and white decedents. Group differences were assessed using chi-squared tests and logistic regression. Across multiple demographics, incident characteristics, and circumstances, AI/AN decedents were significantly different from white decedents. More than one third (35.7%) of AI/AN decedents were aged 10-24 years (versus 11.1% of whites). Compared with whites, AI/AN decedents had 6.6 times the odds of living in a nonmetropolitan area, 2.1 times the odds of a positive alcohol toxicology result, and 2.4 times the odds of a suicide of a friend or family member affecting their death. Suicide prevention efforts should incorporate evidence-based, culturally relevant strategies at individual, interpersonal, and community levels (2) and need to account for the heterogeneity among AI/AN communities (3,4). CDC's NVDRS is an active state-based surveillance system that monitors the occurrence and characteristics of violent deaths, including suicides. NVDRS links three data sources (death certificates, coroner/medical examiner reports, and law enforcement reports) to create a comprehensive picture of who dies from violence, where and when victims are injured, and what factors contributed to the victim's death. This report includes all available 2003-2014 NVDRS * https://wonder.cdc.gov/ucd-icd10.html. data from the 18 participating states. † Analyses were limited to suicide decedents aged ≥10 years. Non-Hispanic AI/AN are defined in NVDRS as persons with ancestries of the original inhabitants of North America who maintain their cultural
InTROduCTIOn Health-related quality of life is a multidimensional concept that provides a broader perspective of health through conveying an individual's ability to function in physical, mental and social domains of life. 1 HRQOL is thus an essential patient-centred outcome measure that is useful to guide health policies. 2 3 HRQOL is preferred over other health indicators for measuring chronic disease burden as it incorporates both length and quality of life. 4 In South Asia, chronic conditions occur at an early age, 5 with detrimental effects on length and quality of life. 6 7 In addition, episodes and fear of hypoglycaemia, recurrent heart attacks, stroke and other long-term complications are not always measured as such, although they have a substantial adverse impact on an individual's overall health status. 8 Therefore, it is important to quantify the effect of chronic conditions on individuals' HRQOL. --- Strengths and limitations of this study ► This is the first population-level health-related quality of life data from South Asia using the European Quality of Life Five Dimension-Visual Analogue Scale including three large metropolitan cities in India and Pakistan with a large sample size . ► Our data provide the first baseline values to be used for monitoring population health status and analysed the relationships between selected chronic conditions and HRQOL. ► HRQOL data presented in this article could be used to complement national health targets by providing a measure of chronic disease burden based on perceived health status rather than solely on mortality and disease prevalence. ► Due to the cross-sectional nature of the data, the causal relationship between socioeconomic parameters or chronic conditions and HRQOL cannot be determined. ► Many chronic conditions were not included in the survey. Therefore, the ranking of most severe health conditions and associated HRQOL is not complete. --- Open Access There are several disease-specific and generic instruments ) available to measure population HRQOL. 4 9-18 However, the EQ5D-VAS is favoured because it is generic, not specific to a particular disease, and it includes multidimensional measures of health profile in five dimensions and the single-dimensional measure VAS to summarise overall health status. 1 Also, EQ5D-VAS has been applied and validated for its use in many population surveys across the world; therefore, it makes the comparison of health status across populations easier. Data on population HRQOL across socioeconomic status from South Asia are scarce, and little is known about the relative associations between different chronic conditions and individual HRQOL. The Centre for Cardiometabolic Risk Reduction in South Asia study 19 had collected data on both EQ5D-VAS and selected chronic conditions from a large representative population of adults in urban South Asia. We used this opportunity to examine population HRQOL in this region. In this paper, we describe the variations in HRQOL by age, gender and SES, and explore the relationships between selected chronic conditions and HRQOL in a representative sample of adults aged ≥20 years from three metropolitan cities in India and Pakistan. We also analysed the relationship between multidimensional EQ5D measures and single-dimensional VAS across major subgroups. --- MeThOdS --- Study design and setting We obtained data from the baseline cross-sectional survey of the CARRS cohort , which recruited a representative sample of non-pregnant adults aged ≥20 years from three urban cities: Chennai, Delhi and Karachi. These metropolitan cities with large and heterogeneous populations in terms of demographic profile and economic transitions offer unique opportunities to assess variations in health status across different socioeconomic groups. The detailed CARRS study design has been published elsewhere. 19 Briefly, a multistage cluster random sampling strategy was used with wards or clusters as the primary sampling units. Using the WHO STEPS survey 'Kish method', two participants, one male and one female, aged ≥20 years and meeting the study eligibility criteria, were selected from each randomly selected household. 19 --- Study measures Comprehensive and uniform data collection instruments were used to capture measurements in all three sites. A summary of all surveillance measures, methods and instruments used in the study has been published in detail. 19 Briefly, a questionnaire was administered to collect information regarding demographic, socioeconomic, behavioural, and past and present health status of the participant. Trained study staff measured anthropometric parameters using standardised techniques and blood pressure twice at each participant's home or at a medical camp organised in the community, after 5 min in a seated position using an electronic BP measuring device . If the difference between the first two systolic or diastolic BP readings was more than 10 mm Hg or 5 mm Hg, respectively, a third reading was taken. Average BP readings of the two/three readings were recorded in the study database. Additionally, fasting blood glucose and glycated haemoglobin were measured. The overall response rates were 94.7% for questionnaire completion and 84.3% for blood tests. Population health status was measured using the EQ5D-VAS questionnaire, which consisted of two components: health state description and self-rated health status on VAS. Health state description includes five dimensions : mobility , self-care , usual activities , pain/discomfort and anxiety/depression. The respondents self-rate their level of severity for each dimension using three levels : having no problems, having some or moderate problems, or being unable to do/having extreme problems. The respondents were asked to choose one of the statements that best described their health status on the surveyed day. For example, three levels of 'mobility' dimension were phrased as 'I have no problems in walking', 'I have some problems in walking' and 'I am confined to bed'. Given the possible permutations of different domains and response types, there are potentially 243 different health profiles. For overall health status, the respondents evaluated their health status using the VAS. The VAS asks respondents to mark health status on the day of the interview on a scale of 0 to 100 . --- Covariates Self-reported age at baseline in completed years was used and categorised into 20-24, 25-34, 35-44, 45-54, 55-64, 65-74 and ≥75. Based on participant responses, we categorised employment status into employed, student, housewife, retired and unemployed. Income class was grouped into three categories based on household monthly income: low-income, less than 10 000 Indian rupees ; middle-income, 10 000-20 000 Indian rupees ; and high-income strata, greater than 20 000 Indian rupees . We categorised highest education level attained into three categories: up to primary, secondary schooling and graduates. The marital status was classified as single, married, widowed and divorced. Body Open Access mass index international classification of ≤17.9 was used to define underweight, 18.0-24.9=normal weight, 25.0-29.9=overweight and ≥30.0= obese. Lifestyle habits like tobacco use were classified based on self-reports as never, former and current user. Data on chronic conditions consisted of self-reported hypertension, diabetes, heart disease, stroke and kidney disease. In addition, diabetes was categorised into self-reported, newly diagnosed , pre-diabetes and normoglycaemia . Similarly, we classified hypertension as self-reported, newly diagnosed , prehypertension and normotensive . --- ethical considerations Study participants provided written informed consent before participation in the study. --- Analysis We used Stata V.14.0 for data analysis. We used the 'svy' command for all analysis to account for the complex survey design. 20 Before any of the survey estimation commands were used, the svyset command was used to specify the variables that described the stratification, sampling weight and primary sampling unit variables. This analysis included data obtained from 16 284 study participants. All the responses coded as refused, unknown or missing were treated as missing data. The frequency and mean were reported to display the level of population health status and the sample characteristics. Percentages of those reporting any problems in EQ5D domains and mean VAS were stratified by respondents' demographic characteristics-age, gender, marital status and SES-education, income and employment status; and health-related indicators-presence of chronic conditions-were reported. Additionally, prevalence ratios of moderate or severe health problems in people with and without chronic conditions were estimated using log binomial regression. Where the model did not reach convergence, Poisson regression model was used. The model was adjusted for sociodemographic covariates and city. Linear regression analysis was performed to explore the relationship between the VAS and the EQ5D measures across major subgroups. In the regression model, VAS was used as a dependent variable, and EQ5D measures were treated as independent variables. --- STudy ReSulTS --- Characteristics of the study population A total of 17 274 individuals in 10 002 households were approached in the three study sites . From these, a total of 16 287 participants were recruited , 5364 Delhi and 4017 Karachi ). Detailed baseline characteristics of the CARRS cohort are published elsewhere. [21][22][23][24] Briefly, the mean age was 42.4 , 52.4% were female, 61% completed secondary schooling and the majority of respondents reported household income level <10 000 Indian rupees . Two-thirds of the study population had BMI ≥25, one-fifth of the respondents reported current tobacco use, and 37.5% had self-reported chronic conditions . --- Overall hRQOl by age and gender A total of 16 284 study participants completed the EQ5D-VAS . Overall, the percentage of respondents reporting any problems in mobility and pain/ discomfort was higher than for other domains. Greater health problems were observed with higher age for both men and women . Problems with mobility were higher with advancing age. However, problems with anxiety/depression did not show such trend. Average health status reported by the CARRS cohort was 74.5 . Women reported lower health status than men . Of the respondents 74% rated a perfect health profile with no difficulties in any EQ-5D domain, and 0.06% rated the worst health profile whereby they had difficulties with every EQ-5D domain. The distribution of the VAS scores was skewed in the direction of best-imagined health state. Only 0.5% respondents rated their health status on VAS under 10, and 10% rated it under 50 . hRQOl and SeS Table 2 and Figure 2 depict the mean VAS, percentage and prevalence ratios of respondents reporting moderate or severe problems in the five dimensions, across various subgroups, respectively. Employed adults and students reported better health status than home makers, retired or unemployed participants. We observed almost equal health status in home makers and retired people. Health status was also similar in the middle-income and high-income groups, while it was significantly lower in the low-income group. Individuals with higher education and high income had higher HRQOL than those with secondary or primary schooling and low-income class. Also, individuals with BMI ≥18-24 kg/m 2 reported better health status than those with BMI ≥25 kg/ m 2 . Current tobacco users reported better health status than former tobacco users or non-users. However, in a stratified analysis of HRQOL in tobacco users by presence or absence of chronic conditions, tobacco users with chronic conditions reported worse health status than non-users. Open Access hRQOl and chronic conditions Overall, individuals with chronic conditions reported lower health status than those without chronic conditions. About half of the respondents with self-reported diabetes, hypertension, stroke, heart disease or chronic kidney disease reported moderate or severe problems in all five domains . Table 3 presents the adjusted prevalence ratio of moderate or severe problems among people with versus without chronic conditions, stratified by sex and cities. Individuals with chronic conditions reported two times greater problems in mobility, usual activities domains, pain/discomfort and anxiety/depression, than in individuals without chronic conditions. Further, a small proportion of individuals with chronic conditions, mostly those with hypertension or diabetes , reported having a perfect health state. --- Relationship between VAS and eQ5d measures across major subgroups We expected that each EQ5D dimension would have an independent relationship with VAS since each of them represents a different aspect of HRQOL. Online supplementary appendix 2 provides the beta coefficients of the weighted regression models . In the overall population, having any problems in mobility, self-care, pain/ discomfort and anxiety/depression were associated with VAS scores that were 10-12 points lower. This inverse relationship of lower VAS with higher domain difficulties was larger in men, elderly , low-income, less educated, divorced and high BMI individuals, compared with their respective counterparts. Tobacco users who reported difficulties in all domains of EQ5D had lower VAS scores . Kidney disease and stroke were the most disabling conditions on all measures. dISCuSSIOn Comparative assessments of HRQOL variations by sociodemographic factors and chronic conditions aid in prioritising public health targets for intervention. Results from this study indicate that less than 10% of the respondents rated their health status as 100 on VAS. Mobility, pain/discomfort and anxiety/ depression were the most commonly reported problems, with the extent of these problems differing across population subgroup. Elderly and women reported significantly greater problems in the mobility, pain/ discomfort and anxiety/depression domains. The mean VAS in our study was 74.5, which is lower than reported by most Western countries , but comparable to the results from other low-income and middle-income countries . [25][26][27][28] Lower health status reported by urban South Asians can be interpreted in a number of ways. The lower scores may be related --- Open Access to generally lower reporting of HRQOL among this group. Alternatively, these scores may reflect morbidity and suboptimal access to healthcare facilities to address health concerns. South Asians experience chronic conditions at relatively younger ages than other race/ethnic groups, and the associated reductions in productivity and income levels may be manifested in these self-reported EQ5D-VAS scores. A higher percentage of individuals reported problems in mobility dimension in South Asia, which is comparable to results from other LMICs. 29 However, problems in anxiety/depression are pretty low in South Asia when compared with the rest of the world; this could be due to underdiagnoses of depression-related problems or stigma attached to these health conditions. These patterns could also reflect differences in how adults in different parts of the world self-rate their health. Worse health status in retired or home makers, compared with employed persons, may be related to being homebound or reflect underlying illnesses that may be the factor driving these participants to be homebound and not employed. In terms of modifiable risk factors, maintaining a healthy BMI cut-off is favoured because individuals with BMI <18 kg/m 2 and ≥25 kg/m 2 reported greater problems in all five domains. Although previous studies have shown that lower levels of tobacco use are linked with higher HRQOL and regular tobacco users with worse health status, 30 31 in our study, former tobacco users reported lower HRQOL than current users. This finding may indicate reverse causality, that is, former tobacco users after experiencing an illness would have quit smoking/tobacco. Further, supported by the fact that tobacco users with chronic conditions or greater difficulties in EQ5D domains had lower VAS scores is suggestive that morbidity and not the habit of tobacco use per se is more closely related to participants' perception of health. However, a causal link between tobacco use and HRQOL cannot be confirmed in this cross-sectional study. Longitudinal analyses of the independent associations between the smoking/tobacco with HRQOL may provide a better understanding of this relationship. Notably, one in five individuals living with known hypertension or diabetes still reported a perfect health state, indicating that these individuals may feel asymptomatic until they experience a clinical event. Also, very small proportions of patients with heart disease and stroke reported perfect health states, suggesting that these individuals may have adapted to their conditions over time and may be benefiting from treatment and self-care that improve their self-rated quality of life. However, we did not investigate whether these other factors like adherence influence quality of life in those living with chronic conditions. Due to the differences in statistical analyses, HRQOL measures, sociodemographic characteristics of the sample and medical conditions selected, the results of this study may not be directly comparable to reports from other countries. 32 Nevertheless, a few differences and common findings are noteworthy. Individuals with stroke or chronic kidney disease rated the lowest health status, Figure 1 Mean self-rated health status using the European Quality of Life Five Dimension-Visual Analogue Scale of respondents by age groups and gender. This figure presents the mean self-rated health status for overall study population by age groups and gender. The EQ5D-VAS measures health status on a scale of 0 to 100 . *p Value for difference between mean EQ5D-VAS between men and women at each age group is statistically significant, p<0.01. Open Access which is consistent with results reported from other studies done in China, Thailand and Western populations. 28 33-36 Since the respondent's health status could be affected by how well the condition was managed, caution is needed in interpreting study results regarding the relative effect of chronic conditions on HRQOL. [37][38][39][40][41] A more Open Access recent Canadian study conducted by Mo et al 42 indicated a strong relationship between low Health Utility Index scores and certain chronic conditions. The authors found that arthritis/rheumatism, heart disease, hypertension, cataracts and diabetes had a negative impact on HRQOL. In the USA, Medical Expenditure Panel Survey data-based study reported that, after adjusting for sociodemographic variables, all of the selected chronic conditions were associated with lower EQ5D scores, with effects greatest for emphysema, followed by heart disease, stroke, high BP, diabetes and asthma. 43 44 Strengths and limitations of this study To our knowledge, this is the first population-level HRQOL data from South Asia using EQ5D-VAS including three large metropolitan cities in India and Pakistan with a large sample size that has used multistage cluster random sampling strategy and standardised protocols and measurement tools across sites. Our data provide the first baseline values to be used for monitoring population health status and analysed the relationships between selected chronic conditions and HRQOL. This information could be used to complement national targets by providing a measure of chronic disease burden based on perceived health status rather than solely on mortality and disease prevalence. In our secondary data analysis, EQ5D and VAS measures correlated well, which confirms the convergent and discriminate validity of the EQ5D instrument. There are several limitations to this study. First, due to the cross-sectional nature of the data, the causal relationship between socioeconomic parameters/chronic conditions and HRQOL cannot be determined and is not implied. Second, many chronic conditions were not included in the survey. Therefore, the ranking of most severe health conditions and associated HRQOL is not complete. Third, the selected chronic conditions were self-reported, and the study investigators did not examine the accuracy of information. However, this poses less of a threat to validity because self-reporting of heart diseases, stroke and kidney diseases is pretty accurate in community surveys. [45][46][47][48] Further, hypertension and diabetes were measured in this study using standardised methods. Lastly, EQ5D data were self-reported and the variation in how individuals perceive disability varies widely. However, this should be less of a problem given the large sample size in this study. Fourth, the findings of this study may not be replicable if researchers use a different HRQOL instrument, [49][50][51][52][53][54] which can be tested in a future study. Public health relevance and policy implications HRQOL data from this study provide baseline values for monitoring variations in health for specific population groups on the basis of gender, education, employment, income, presence of chronic conditions and place of residence. These data are also relevant to assess the overall burden of physical and mental health problems that are not disease-specific. In aggregate form, such information could be used to complement national health targets by providing a measure based on health status rather than mortality or disease prevalence alone. Therefore, the policy makers can use the HRQOL measures and the resulting data from this study to minimise health disparities and allocate resources among competing health programme based on burden of physical or mental health problems in a specific group. 55 The lower health status reported by female, less educated, unemployed and low-income groups may indicate higher levels of stress in these groups. 17 Other potential contributing factors that are known to influence health status are living conditions, gross domestic product per capita, inequities in income distributions and access to healthcare. [56][57][58][59][60][61] Therefore, public health initiatives should focus on intersectoral approaches to address issues of education, generating more avenues for employment and improving the quality and access of primary healthcare. Lastly, the issue of 'clinical' or 'policy' relevance of the difference in EQ5D measures needs much discourse. For example, if the VAS in two groups of the population is 5 or 10 points different from each other, we cannot make a clinical judgement on how much these two groups would differ in their actual health status. These issues relate to determining a minimally significant difference/change in HRQOL and needs investigation in future studies. However, because of HRQOL sensitivity to time trends as shown in previous studies, [62][63][64] these measures are also likely to be useful in determining the effect of major population-based policies or interventions. COnCluSIOn HRQOL appears to be lower with higher age and among women in South Asia. Our data demonstrate significantly lower HRQOL in key demographic groups and those with chronic conditions, which are consistent with previous studies. These data provide insights on inequalities in population health status, and potentially reveal unmet needs in the community to guide health policies. --- Open Access significantly in the revision of the manuscript. All authors have approved the submission of this version of the manuscript. --- Open Access
Objectives Health-related quality of life (HRQOL) is a key indicator of health. However, HRQOL data from representative populations in South Asia are lacking. This study aims to describe HRQOL overall, by age, gender and socioeconomic status, and examine the associations between selected chronic conditions and HRQOL in adults from three urban cities in South Asia. Methods We used data from 16 287 adults aged ≥20 years from the baseline survey of the Centre for Cardiometabolic Risk Reduction in South Asia cohort (2010-2011). HRQOL was measured using the European Quality of Life Five Dimension-Visual Analogue Scale (EQ5D-VAS), which measures health status on a scale of 0 (worst health status) to 100 (best possible health status). Results 16 284 participants completed the EQ5D-VAS. Mean age was 42.4 (±13.3) years and 52.4% were women. 14% of the respondents reported problems in mobility and pain/discomfort domains. Mean VAS score was 74 (95% CI 73.7 to 74.2). Significantly lower health status was found in elderly (64.1), women (71.6), unemployed (68.4), less educated (71.2) and low-income group (73.4). Individuals with chronic conditions reported worse health status than those without (67.4 vs 76.2): prevalence ratio, 1.8 (95% CI 1.61 to 2.04). Conclusions Our data demonstrate significantly lower HRQOL in key demographic groups and those with chronic conditions, which is consistent with previous studies. These data provide insights on inequalities in population health status, and potentially reveal unmet needs in the community to guide health policies.
INTRODUCTION While being mostly a success story, Wikipedia and other Wikimedia projects have also been facing many challenges over time. First, as a peer-produced knowledge repository, Wikipedia is highly dependent on its online peer production community. However, Wikipedia has seen declines in the number of contributors over time and has been struggling with growing its editor base especially from the perspective of retaining new editors [4,5]. Awareness of newcomers barriers to participation in open collaboration projects [27] have lead to the design and creation of interventions that aim to provide new editors with improved socialisation and better onboarding experience [16,17]. While such interventions show promising results, a more sustainable and also diverse editor base including new forms of contribution-beyond editing are still open issues [39]. A second challenge that is closely related to the decline in editors is structural sexism and the lack of diversity among contributors [11] which also results in biased and culturally less diverse Wikipedia content [1,15,31]. These issues have recently been summarized under the term knowledge gaps [39]. Only a platform that aims at higher diversity in contributorship and content will be able to achieve knowledge equity which is one of the most central goals Wikipedia is striving for [39]. In this paper, we argue that edit-a-thons are a possibility to make Wikipedia content less biased and more diverse by focusing on certain underrepresented topics as seen in e.g. both the Women in STEM and Arts+Feminism event series. At the time of writing, for 2021 the Arts+Feminism campaign lists 135 programs with 2309 editors who contributed almost 3000 new articles and edited another 13000 articles [34]. At the same time, edit-a-thons function as outreach events that allow for drawing in new contributors from many diverse backgrounds and countries. Edit-a-thon is a portmanteau of edit and marathon and describes "1) a scheduled time where people edit Wikipedia together, whether offline, online, or a mix of both; 2) typically focused on a specific topic, such as science or women's history; 3) a way to give newcomers an insight into how Wikipedia works" [37]. While the idea of hosting such events was first proposed in 2004, the Wikimedia Foundation cites the British Library to be the first to use of the word "edit-a-thon" to describe their event in January 2011 [12]. Research shows that edit-a-thons support new forms of knowledge construction, which allow opportunities for the democratisation of knowledge, the diversification of Wikipedia's editor demographic and the spread of information on traditionally marginalised subjects [7]. As mentioned, such gatherings -be they held virtual or physical -also foster recruitment and integration of newcomers and increase Wikipedia literacy among participants [7]. However, many aspects of edit-a-thons still remain unknown. First, less is known about the actual retention rate of those who participated in an edit-a-thon and continue editing after the event has ended. An internal Wikimedia evaluation of edit-a-thons held in 2015 came to the conclusion that "about 52% of participants [who] identified as new users made at least one edit one month after their event, but the percentage editing dropped to 15% in the sixth months after their event" [33]. This stands in contrast to Farzan et al. findings, who estimate that only 1% of newcomers actually continue to edit Wikipedia after the edit-a-thon [3]. Second, although we can see a growing number of scholarly work on Wikipedia edit-a-thons, researchers argue that the body of research on this kind of events is still underdeveloped [30]. Previous studies highlight the complex interactions that are at play between motivations, strategies and values of facilitators and participants of edit-a-thons [12]. This implies that if we want to get a more holistic picture of the role that edit-a-thons play in the Wikimedia ecosystem -and ultimately what influences retention rates of new editors -additional research of edit-a-thons in varied contexts is necessary [12]. Finally, most studies on edit-a-thons and new editor experience on Wikipedia have been performed on English Wikipedia only [17]. We take this as a motivation to conduct and report on an ethnomethodlogically inspired participatory observation of a GLAM edit-a-thon held by a Polish editor collective. Throughout this observation, we put special attention on the incidents of motivation and frustration that occurred during the event and how they influence the participant's experience. Earlier work on Wikipedia editor experience, helped us to develop a coding scheme to account for those incidents in our analysis [26]. Furthermore, we apply Hofstede's 6D Model of National Culture [6,8] to find a theoretical underpinning for further contextualizing of how the participants, the host and an administrator from the Wikipedia editor community interacted with each other. Our findings indicate that the type of motivational factors is very diverse and varies from general motivation to fill in knowledge gaps, in the beginning, to share good resources for citations at later stages of the edit-a-thon. However, participants also experience moments of frustration, especially concerning the usability of the editing interface and when navigating a complex bureaucracy of policies and procedures. Finally, our analysis shows that cultural idiosyncrasies can intensify the frustrating experience of social challenges. We conclude our paper with recommendations for possible training programs and suggestions for future work. --- RELATED WORK In this section, we review relevant scholarly work related to our study. We present previous studies on Wikipedia edita-thons, academic research on Wikipedia community socialization strategies and work that covers Polish Wikipedia's editor community. --- Wikipedia Editing and Edit-a-thons A thorough and systematic review that describes all existing relevant work on Wikipedia editing and editor behaviour is close to impossible. Already in 2012, Okoli et al. reported on more than 200 publications that studied issues related to participation and collaboration on Wikipedia [20]. These studies cover a broad range of topics including motivational factors for participation or cultural and linguistic effects on participation. For example, Pfeil et al., like we, use Hofstede's Model of National Culture to study the influence of culture on editing behaviour. They find a significant correlation, indicating that cultural background influences users behaviour on Wikipedia and the Internet in general [22]. However, none of the articles reviewed by Okoli et al. mention collaborative writing events like edit-a-thons. To the best of our knowledge, the first scientific reports on edit-a-thons can not be found before 2015. Evans et al. report on the outcomes of the Art+Feminsim edit-a-thons held in 2015 over the weekend of International Women's Day . They argue that this event was especially successful as it fell directly into the trend of that time which uncovered the systematic bias and online harassment against women [2]. They see Arts+Feminism as a symbiotic way to close the gender gap in both content and participation on Wikipedia and support the idea of more feminism related edit-a-thons as a contribution to close the internet gender gap [2]. The majority of research on edit-a-thons, however, view the events with a pedagogical lens considering them as collaborative learning events [7,21,30]. Oliver investigated the use of edit-a-thons as a substitute for classroom assignments when teaching information literacy. Student's reflections in form of qualitative and quantitative data showed that they learned valuable lessons on researching information and writing, especially how to be critical about information sources [21]. Hood and Littlejohn, via the means of interviews, captured narrative learning stories of nine participants taking part in an edit-a-thon held at the University of Edinburgh [7]. The edit-a-thon was designed as an informal professional learning event that combines online activity with offline, in-person collaboration and interaction. Participants reported having learned valuable technical skills and increased their Wikipedia literacy. However, the reflections about biases and responsibilities in knowledge production and dissemination were rated highly among students [7]. In similar veins, Vetter and Sarraf, in their assessment of an Arts+Feminism edit-a-thon held at Indiana University of Pennsylvania, found that edit-a-thons are not only facilitators of Wikipedia literacy but foster critical thinking, digital literacy, and technical skills [30]. Farzan et al. studied the effect of Art+Feminism edit-a-thons on newcomers onboarding via the means of triangulating log data from Wikipedia and Twitter. Their results suggest that these events are very successful in attracting new members [3]. Moreover, they show that on-event support for editing during the event and social interactions can lead to higher retention rates [3]. However, according to their data only around 1% of participants can actually be called retained editors [3]. The presented studies had a strong focus on the events as a whole. One exception is the study by March and Dasgupta. March and Dasgupta interviewed 13 edit-a-thon facilitators to uncover their motivations for organizing these events and the challenges they face [12]. They discover that the personal and institutional values that inspire the events go far beyond adding content and editors to Wikipedia aim at strengthening peoples information literacy and building communities that extend beyond Wikipedia's editor community. --- Wikipedia Community Socialization Stategies Typically, collaboration on Wikipedia takes place outside of the encyclopedia's articles in the talk pages and discussion threads. It is usually also there where newcomers learn how to navigate any number of technical and organizational obstacles when they start editing and where community involvement and editor socialization takes place [14]. Already in 2013, when the decline in new editors and editor retention has been noticed for some time, additional interventions for supporting and socializing new Wikipedia editors have been introduced [16]. Morgan --- et al. present the Wikipedia Teahouse, a support space designed to boost overall editor retention, bridge the editor gender gap and improve general editor experience and well-being [16]. Early results proved this intervention to be effective for community diversification and new editor retention. In 2018, Morgan and Halfaker presented further evidence for the Wikipedia Teahouse success story. In a controlled study, they are able to show increased retention for both low-and high activity newcomers. Besides the Teahouse, other community socialization strategies have been proposed and tested. Such personalized socialization opportunities included mentoring programs such as Adopt-a-User [18] or personalized invitations to WikiProjects. However, Morgan and Halfaker suspect, that they only appealed to new editors who were already highly likely to be retained. As such, the retention potential of edit-a-thons is still not really known. --- Polish Editor Community The Polish-language edition of Wikipedia and its community of contributors has been the focus of several studies before. Many of these studies apply social network methodology to study its editor community [9,29,32]. Wierzbicki, Turek and Nielek, for example, propose the use of social network analysis to evaluate teams of authors on Polish Wikipedia [32]. The created network contains the dimensions trust, distrust acquaintance and knowledge. Their main goal is to measure team quality i.e. whether a group of authors contributed to a featured article. Their initial results indicated that acquaintance and trust have a positive impact on team quality. Surprisingly, distrustful behaviour turned out to be beneficial for team quality too. Also based on article edit history, Jankowski-Lorek et al. model the process of admin elections using multidimensional behavioural networks for discovering good admin candidates [9]. They argue that the admin community isn't growing fast enough to sustain the growing needs of Wikipedia. However, they could not support their hypothesis that adminship is a closed circle. They propose a method based on editing history which could be a potential way forward to recommend new administrators. [19]. Through a combination of task-based usability tests and in-depth interviews, the authors identified several challenges and barriers that prevented the participants from successfully contributing to Wikipedia. Among the biggest challenges they identified: an incoherent user interface, issues with the information architecture , lack of timely system feedback and a lack of guidance and support during the editing process. Apart from fixing usability and UX problems of the Mediawiki software, Nielek et al. suggest an online learning course supplemented by offline meetings to involve elderly editors in the community building process [19]. We argue that especially edit-a-thons seem like a perfect fit to realize this idea. Skorupska et al. build on Nielek et al. ideas and present the concept of a chatbot that could make Wikipedia editing and data verification more accessible, especially to elderly users [28]. --- Nielek et al. studied how elderly people can be involved in contributing to Polish Wikipedia To sum up, while we see significant research on editing and editor behaviour also from a community perspective and even within the Polish Wikipedia community, there has not been any study yet, that reported details on the experience of participants which could lead to further insights on how to improve editor socialization and working atmosphere at such writing events. --- METHOD AND DATA COLLECTION We now provide a brief description of our methodological choice and the setting in which we conducted our observation i.e. details about the edit-a-thon, the collective organizing it and its participants. To investigate editor experience and how cultural context might influence it, we employ an ethnomethodological perspective. Our study follows the idea of a study of "talk-in-interaction within various 'institutional' or 'organisational' settings to investigate what types of interactional structures are specific to these settings" [25, p.151]. Our method can be best described as participatory observation, with two researchers actively participating in the edit-a-thon conversing with the participants when necessary. As we did not have any experience in editing Wikipedia before we took the role of newcomers joining the Wikipedia editing community for the first time as it is the case for many edit-a-thon participants. Data is collected in course of an edit-a-thon held by a Polish collective in November 2020. The collective was founded, inspired by the Art+Feminism initiative, at the end of 2018 beginning of 2019, and is an informal group of women with backgrounds in cultural studies and art history that specialises in creating articles on female, transgender and LGBTQ artists in Polish Wikipedia. In 2020, the group had 61 active editors who created 542 new articles, uploaded 665 items to Wikimedia Commons and edited 37.6 K further articles resulting in a total of 63.9 K edits. The group and the edit-a-thons it organizes are supported by a Wikimedia Foundation Rapid Grant and Wikigrants. The edit-a-thon lasted for four hours between 16:00 to 20:00 on 21 November 2020 and was a virtual event held via Google Hangouts. As in previous editions, the edit-a-thon followed the idea of adding new or extending existing articles of female Polish architects, photographers, illustrators etc. on Polish Wikipedia. A list of possible edits was curated by the community members in a publicly accessible Google doc before the meeting started to give newcomers the chance to work on an article without having to think about a person themselves. On that day, the group reflected different community members, including a Polish Wikipedia administrator, Wikipedia redactors, experienced editors, and new editors. In total, 16 participants joined the edit-a-thon at various stages. Almost all participants used a desktop PC to edit articles. Only one participant used her mobile device. Events like this usually do not have a strict agenda; the editors are free to decide whether they join the meeting only for some time or participate actively during the entire event. Some participants join only at the beginning of the meeting to confirm the article and ask questions to come back at the end of the event with the article ready for publication. Both the host and all participants share their screens when they encounter an issue or are willing to advise collaborators. Everyone is allowed to ask questions freely, and people who get distracted can mute the conversation. This format was beneficial to our study since we as observers could ask follow-up questions or get in-depth reflections from the participants. At the beginning of the edit-a-thon all participants were informed about the goal of the study, how data will be gathered, stored and analysed and informed consent was obtained verbally by all partakers. During the edit-a-thon, we took field notes and the complete edit-a-thon was recorded on video. The field notes and the transcript of the video recordings served as the basis of data analysis. During the data collection, the analysis process i.e. the coding of our data and the presentation of our findings, we followed the recommendations by Kawulich [10]. [26] and applied in the data analysis process. --- DATA ANALYSIS In this section, we present the coding scheme and relevant theoretical constructs that help us with analysing and interpreting our results. Inspired by earlier work that employed ethnomethodological-inspired participatory observation, our data analysis process follows a conversation analytic approach [23]. We analyse our results in two steps: In a first step, and based on findings from earlier studies on new editor experience [26], we created a coding scheme for deductively coding the transcript on instances of motivation and frustration that participants experienced during the edit-a-thon. The New Editor Experience project focused on supporting mid-sized Wikipedias with increasing their editor base and conducted design research with new editors of South Korean and Czech Wikipedia to uncover their characteristics, behaviours and motivations as well as their key challenges [26]. As edit-a-thons are one of many aims to recruit and retain new editors, we investigated which and how many motivation incidents and challenges i.e. frustration incidents occur for participants during such a collaborative writing event. --- Coding Schema Table 1 shows the coding schema and lists all motivation and frustration incidents that got coded for. The codes and descriptions for motivations are taken from the personas published in the new editor experience project report [26, p.12]. The codes for frustration incidents and their descriptions are inspired by the summary of key challenges identified in the same study [26, p.33]. In an deductive coding process, we, whenever appropriate, applied one or multiple of these codes to a turn in the conversations among participants during the edit-a-thon. --- Hofstede's 6D Model of National Culture New editors experience during an edit-a-thon is likely to be influenced by many context factors e.g., the size of the group, the experience of editors involved, whether it is a physical or virtual event and many more. We were interested in to what extent cultural context influences the participant's behaviour and conversations. We turned to Hofstede's 6D Model of National Culture to find a theoretical underpinning for how to interpret the way our participants interacted and conversed with each other. Hofstede's model is a common framework for describing the effects of a society's culture on the value of its members and how these affect their behavior [6]. Often, these dimensions are defined via opposing concept pairs. The first dimension, Power Distance, refers to the degree of how accepting less powerful members of organizations and institutions are of unequal power distributions. The second dimension, Individualism vs. Collectivism, describes the extent to which people feel independent as opposed to being dependent on each other as members of a larger collective. The third dimension, Masculinity vs. Femininity covers social role division between genders. In masculine societies, people are driven by competition, achievement and success while in feminine societies caring for others and a focus on the quality of life is more important. The fourth dimension Uncertainty Avoidance covers how threatened a society feels by ambiguous or unknown situations and which measures are in place to deal with the anxiety of an unpredictable future. The fifths dimension, Long Term Orientation, describes how welcoming a society is to societal change and how strong it maintains links with its own past. The sixth and final dimension, Indulgence vs. Restraint, covers how strongly people in a society follow their desire and impulses and give room to socialisation with others and leisure time as opposed to duty being the normal state of being. Figure 1 shows a bar chart that compares the three countries China, Denmark and Poland on the aforementioned six dimensions, and gives a good impression of how different cultural orientations in societies can be according to that scale. Polish society can be characterized as an individualist society in which members mostly take care of themselves and their immediate families [8]. In individualist societies offence causes a loss of self-esteem and guilt. While highly individualistic, Polish society also has a strong need for a clear hierarchy. Following [8] high numbers in both Individualism vs. Collectivism and Power Distance causes tension in a culture. Furthermore, Poland is a masculine country in which people live in order to work and conflicts are resolved by fighting them out. "Managers are expected to be decisive and assertive" [8]. Moreover, Polish people have a strong tendency to avoid uncertainty which makes them follow rigid codes of beliefs and rules. This leads to a hard-working culture with high precision. However, innovation may be resisted. Regarding their Long Term Orientation Polish culture can be considered as normative with a sense for traditions. Finally, Polish society is a restrained society. Restrained societies do not put much focus on leisure time. They "feel that indulging themselves is somewhat wrong" [8]. We will use these characteristics of Polish society to interpret the role of main actors and participants behaviour during the edit-a-thon. --- FINDINGS During the four-hour meeting, the group accomplished to publish eleven new articles and extend two existing ones. Observing this process and the surrounding discussions, we recorded a total of 53 motivation incidents and 63 frustration incidents. These findings are broken down in Figure 2. Fixing bugs, closing knowledge gaps and sharing one's own knowledge were the most frequent motivational aspects that occurred during the session . Due to the fact that the edit-a-thon followed a common goal, the number of instances in which participants wanted to promote their work or themselves was low . The type and frequency of motivational aspects vary depending on the phase of the edit-a-thon and the specific tasks at hand. In the beginning, participants expressed excitement for writing biographical notes about their favourite female artists and spreading knowledge about them in society via a publicly accessible Wikipedia article. At a later stage, editors were looking forward to sharing knowledge about good sources for references and strategies and how to find them. Finally, towards the end, when participants had their initial drafts published as articles, they got motivated to begin new articles out of the contentment of having achieved the task of publishing despite many hurdles and frustrating incidents. When looking at it from a time series perspective, many motivational incidents were followed by a frustration incident. The most common frustration incidents recorded were usability problems and UX issues i.e. problems resulting from an unintuitive user interface . On multiple occasions during the edit-a-thon participants complained about not being able to find specific functions/buttons in the publishing process e.g. for starting to edit a page, for moving an article from the draft section over to the publishing section or which functions to use to finally publish an article. This was both the case for the visual and the source editor. Another step in the publishing process that caused confusion among participants was the step of assigning articles to categories as many editors were of the impression that this is done automatically. Participants also discussed the UX flaws of experimental features like the translation tool, which none of the participants was recommending to use [13]. Moreover, the administrator condemned behavior in which articles only get translated from English to Polish. This is in line with previous observations, that especially among senior editors and administrators, the idea of rather not having an entry for an article then a 'bad' translation of an English article is widespread. In some cases, frustration incidents were overlapping i.e. coded with multiple codes. In the case of article categorization, for example, confusion was caused by the lack of official rules regarding which and how many categories should an article be assigned to ). Some of these cases were resolved by the host sharing her screen and sharing good technical practices or standard procedures like copying categories from similar types of articles or linking to other already existing articles. The host suggested creating red links which from her point of view hinted towards knowledge gaps and possibilities to grow smaller language editions. This was also linked to a motivation incident as one editor remarked that spotting red links motivate her to contribute more to Wikipedia and close such gaps. Another example is finding the ideal structure for a biography entry. Here, the host would advise to find a 'best article' and copy paste it's source code. The second dimension Individualism vs. Collectivism characterises Polish society as an individualistic society, which contradicts the hierarchical order, resulting in tensions within a society that scores high on both dimensions. During the edit-a-thon, this cultural factor may have lead experienced editors to challenge administrators' rules which created tensions. During the observation, these incidents became evident when the host of the meeting or one of the more experienced editors did not agree with the policies brought forward by the administrator and shared opinions about Wikipedia being a free encyclopedia. Especially, when the administrator brought forward aspects of notability i.e. whether an artist was respected enough to have a Wikipedia article, the host and senior editors hinted towards the new encyclopedic rules for young modern female artists who do not fall into the typical rules on Wikipedia's notability criteria [36]. During the discussion, many new editors mentioned that with rigid policies in place closing knowledge gaps and overcoming biases in Wikipedia is difficult. They argued that societal structures i.e. keeping women away from award ceremonies etc. make it impossible to find the necessary sources that would document their significance and that they are worth of notice. While this might not be so much the case nowadays, it is a problem for historical figures. However, it is mostly articles about women that get deleted by administrators due to an alleged lack of notability. All in all, unclear rules and a strict application of policy by the administrator often lead to this kind of articles being blocked from publications during the edit-a-thon. The Polish culture, according to the Hofstede's model, is a masculine culture, with a high drive for avoiding uncertainty and a clear long term orientation [8]. This means that society is characterised by a normative culture suspicious of change in which conflicts are being solved by fights rather than compromise. This became obvious in most discussions between editors, the host and the administrator as the administrator did not really engage in dialogue but instead referred to the official rules blocking any real discussion. Everything that seemed unorthodox or not compliant with the official rules appeared to make him feel insecure which is probably why he insisted on the strict application of policies. This seems also counter-intuitive as one of Wikipedia's main rules is: Ignore all rules [38]. Moreover, he acted decisive and assertive -as expected from managers in masculine cultures -and the tone of voice in which this dialogue was lead by the administrator was rather harsh. This caused a certain tension in the group which consisted mainly of younger female editors. Following the discussion with the administrator, multiple editors complained that even on discussion pages in Polish Wikipedia, prolonged discussions are rather the norm rather than the exception and are often impossible to solve via achieving consensus. Nevertheless, one has to mention that the administrators' help has also been perceived as helpful for example when he hinted towards documentation. Finally, the low score for indulgence for Polish culture was expressed among Wikipedia editors with the pessimism in bringing actual change. This became evident in two cases: first one participant mentioned that articles about women are generally rejected by administrators although they would have well-researched references and sources. Second, it became evident in the discussion at the end of the observation that participants showed uncertainty about their skills and competencies to change the rules for modern artists' publications on Wikipedia. The contributors discussed if it was more meaningful to instead create a list of possible changes and new articles and pass this list on to administrators as they did not truly believe in having the skills to do this themselves. --- DISCUSSION AND CONCLUSION Wikipedia needs more Wikipedians and those should ideally come from diverse backgrounds. Only by recruiting new editors with various differing ethnic, racial, geographic and cultural backgrounds holding various perspectives e.g. political beliefs or sexual orientations, the platform can achieve it's goals of bridging knowledge gaps and creating knowledge equity [39]. We believe that edit-a-thons have the potential to be part of solving these problems. Despite being around for many years now, systematic investigations of how editors experience these collaborative writings events are missing to a large degree. In this paper, we reported on a participatory observation conducted during a Arts+Feminism edit-a-thon held by a Polish editor community in November 2020. To learn more about the participant's experience, we recorded, transcribed and coded incidents of motivation and frustration that occurred during the collaborative writing event, as well as the interaction between the participants, the host and the administrator. We used Hofstede's 6D Model of National Culture as a theoretical basis to explain the behaviour of all people involved. Our findings support the previous results by research on mid-size Wikipedias exposing communication issues and unintuitive interface as problematic aspects of editor experience [26]. While those problems have been known for several years now, especially the usability issues haven't been fixed yet. However, in our findings, it became yet again evident that the greatest challenges new editors face are not technological but conceptual and cultural. Thus, this is a level where cultural identity measurable via Hofstede's index has a huge influence on editor experience. As new editors struggle with understanding Wikipedia policies, finding help and receiving feedback, the administrator's role and how she/he conveys policy rules, engages in discussions and frames feedback is essential. However, especially experienced editors and administrators struggle with providing personal, constructive feedback and e.g. explaining the rationals of policy rules to new editors. Previous studies found multiple explanations for this [26]. First, as experienced editors and administrators develop more advanced levels of their skills they become removed from the new editor experience and lose their competence to relate to new editors and their problems. Second, experienced editors and administrators feel that their efforts of mentoring are wasted if new editor investment and retention rate is low [26]. It is especially in these moments that issues expressed and experienced during the edit-a-thon, such as gender bias or the organization's authoritative character, may be intensified by the characteristics of Polish culture described with Hofstede's metric [6]. Polish society is characterised as a strong malefocused society with a high Power Distance which we interpret as what lead the administrator to a strict application of Wikipedia policies and the unwillingness to engage in discussions and thus also the lack of contextualization and clear description of rationale behind the policies. However, this left many of the new editors frustrated and culminated to a point where they themselves were in doubt whether they could bring any change to Wikipedia and whether it wouldn't be more effective to leave possible changes to Wikipedia for the administrator to do. From our point of view, this attitude is yet again related to Polish culture which is restraining people from fulfilling existing needs. Our study is limited to the degree that we did not conduct multiple observations in different Wikipedia communities and cultures and performed a comparative analysis of the influence of culture on new editor experience during edit-athons. Thus we can not be entirely sure whether the editors experience and the general climate during the edit-a-thon are a result of Polish culture, or whether it was mostly influenced by the administrators personality. Moreover, the strong gender imbalance, i.e. most editors being female and the administrator being male, could have also played a role. However, the goal of this study is not to generalize across multiple communities and events. Our aim is to contribute to research on editor experience during edit-a-thons and raise awareness of the fact that culture can have a huge impact on newcomers experience during edit-a-thons. We also believe that this sets the opportunity to improve training material that is offered for edit-a-thon hosting. The Wikimedia foundation already provides excellent material on how to host edit-a-thons and other editing events in three modules [35]. One option would be to add additional material for coaching experienced editors and administrators on how to provide meaningful feedback and mentorship to new editors while keeping potential influences of cultural dimensions in mind. This material could be tailored towards different regions and cultures depending on how they score on the 6D scale. With this article we try to highlight the necessity of future research on edit-a-thons and what influence a communities' culture has on editor experience and editor retention. Future work should perform a comparative analysis of edit-a-thons hosted in countries with differing positions on Hoftede's scale. Finally, there is a need to investigate the influence of edit-a-thons on newcomer retention rate in greater detail in general.
Wikipedia is one of the most important sources of encyclopedic knowledge and among the most visited websites on the internet. As a peer-produced knowledge repository, Wikipedia is dependent on its community of contributors. A healthy contributor community and a steady stream of new editors from diverse backgrounds are especially vital for the platform's future in its endeavour of closing knowledge gaps and combating biases and a lack of diversity that Wikipedia suffers from. Edit-a-thons are social activities aiming to improve content and create new articles on Wikipedia with the purpose of recruitment and onboarding of newcomers. Although edit-a-thons have been facilitated and hosted for many years now, little is known how editors experience such events. In this paper, we study editors experience during a virtual edit-a-thon by applying an ethnomethodological perspective. We use a participatory observation to study incidents of motivation and frustration occurring during the collaborative online writing event. Moreover, we use Hofstede's 6D Model of National Culture to explore what influence culture has on participants' actions, expressed feelings and thoughts while interacting with the administrator and with each other. Our findings indicate that the type of motivational factors is very diverse and varies from general motivation to fill in knowledge gaps, in the beginning, to share good resources for citations at later stages of the edit-a-thon. However, participants also experience moments of frustration, especially concerning the usability of the editing interface and when navigating a complex bureaucracy of policies and procedures. Finally, our analysis shows that cultural idiosyncrasies can intensify the frustrating experience of social challenges. CCS Concepts: • Human-centered computing → Wikis; Empirical studies in collaborative and social computing.
On average, disasters occur somewhere in the world each day, including natural events and non-natural events . Such events share the ability to threaten lives and property, disrupt emergency services and infrastructure, result in evacuation and displacement of varying distance and duration, increase health risks, and disrupt communities. Over 50 % of the US population lives in coastal watershed counties , where the frequency, intensity and duration of hurricanes is predicted to increase . Superstorm Sandy made landfall in New Jersey and New York 29-30 October 2012, resulting in 159 deaths and causing over $70 billion in damages . Such events are extremely stressful to individuals and communities , and stress may be increased by lack of reliable and trusted information either before an on-coming storm, or in its aftermath. This study examined information sources used by individuals in New Jersey before, during, and after Sandy. People were surveyed in coastal communities, and in central New Jersey. Four general questions were assessed : 1) Whom did you trust for information about evacuation routes before Sandy made landfall?, 2) How did you obtain general safety information during and after Sandy? 3) How did you obtain information about health issues during and after Sandy?, and 4) Where did you obtain information about mold remediation after Sandy? . Information sources for mold were also examined because it is one of the serious side-effects of massive flooding . Obtaining information on these 4 questions will help chart a path forward that enhances preparedness, taking into account what actually worked during the Sandy disaster. With the rise in web-based access, including social media through cell phones, the forms of communication are now more varied, but it is unclear what actually works during a disaster. Part of preparedness is managing communication issues , which clearly involves sources of information, as well as the information itself. There are three components of communication: a) communication channel has to be operational, b) information has to be timely and reliable, and c) receptors need to trust the information and believe it applies to them. During a disaster characterized by electricity outages lasting days, the sources may be non-operational and/or the receptors may lack access. New Jersey and New York were particularly hard hit by Sandy, as it stalled over the region. Thousands of homes were without power for weeks, and many people were displaced from homes damaged by storm surges, flooding, and loss of power. Mandatory evacuation orders were issued for some shore communities before the storm, but not for others. Some individuals sheltered in place, while others evacuated to shelters or the homes of family or friends. Many subjects evacuated after the storm due to lack of electricity, heat, and food, and contaminated drinking water . In the aftermath, coastal homes and businesses were submerged in flood water for weeks, and 9 months later, many people are still displaced. Over 345,000 housing units were destroyed in New Jersey alone, with nearly $3 billion in damages to NJ transit, roads, and bridges . Even students in undamaged dormitories and others were evacuated post-Sandy because of drinking water contamination . Serious health conditions, emotional distress, and grief follow such disasters . Post-disaster needs assessments are essential to understand construction and rebuilding, as well as postdisaster mental health assessments . Equally important is determining how individuals obtained information regarding the storm, conditions, health effects, and evacuation routes . In many cases, effective disaster planning must account for specific obstacles to action , and lack of information may be problematic, especially for vulnerable populations . Sound public policy and communication strategies can only be developed with a solid information base . Reynolds and Seeger suggested that crisis and emergency risk communication need to be an integrative model that involves communication before, during, and after a disaster. Such models are critical for development of a strategy to deal with storm-related disasters. However, as well as the message, it is important to understand the sources people use to obtain information, and whether this varies by age, location, or income. The present study addressed the need for information on communication methods that were successful. The study commenced shortly after Sandy, and many of the interviewees were still displaced. --- METHODS Under approved human subjects protocols from Rutgers University, people were interviewed along coastal New Jersey from Sandy Hook to Atlantic City , and in central New Jersey centered around New Brunswick . No personal identifiers were obtained. Interviews were conducted where subjects gathered, including town hall meetings, public meetings, FEMA and town offices, shelters, homes, recreation centers, universities, convenience stores and fast food places. The latter were often the only sources of food and supplies immediately following the storm. People were also interviewed at make-shift food and coffee bars set up on street corners, as well as individuals assessing damage and making repairs. Everyone present was approached for an interview, and had a very low refusal rate . People were asked if they would participate in a survey being conducted by Rutgers University, and were told it was voluntary. An interview lasted about 20-25 min, but interviewers remained to talk with respondents about their concerns. Interviews were conducted within 100 days of Sandy to ensure that subjects remembered their concerns and information sources. This study mainly addresses information sources; health effects data may be found elsewhere . The survey instrument had 6 categories, including storm effects , general concerns before, during and after Sandy, information sources , health concerns, renovations/repairs and mold, and demographics. Demographics were asked last so that individuals were at ease with providing information on ethnicity and income. Since the questions were open-ended, people could give multiple, unprompted answers. Differences among groups were examined using Kruskal-Wallis non-parametric Analysis of Variance. A P < 0.05 was considered statistically significant. For the types of information used, sources used by coastal and central Jersey respondents were collapsed when few people gave that answer . However, these sources are listed in the table because they are important for understanding the range of sources used. --- RESULTS --- Demographics and Damage Table 1 provides demographic information, evacuation status, height of flooding, mold status, and disruption of communication. The populations were similar in gender and education . Shore respondents were older , had higher incomes , and more likely to be white . Shore respondents were more likely to live in a private home , were more likely to have evacuated . and were more likely to have encountered mold , than respondents in central Jersey. Damage differed between the two areas. More shore respondents evacuated before , during, and after Sandy and more lost electricity 95 vs 83%. Most significantly shore respondents averaged 22.8 days without electricity and 28.9 days without internet compared to 6 and 6.5 days for central New Jersey. Length of time without the internet depended upon whether respondents lived along the coast or in central New Jersey, and varied by provider . --- Evacuation Information One of the most important communication issues was the provision of evacuation information, which was generally provided well before the storm. Predictions that eventually proved accurate, about Sandy's projected path, were available up to 5 days in advance. Such information was provided with much hyperbole on TV and radio, and also by police, fire and reverse 911. As the storm approached, the Governor repeatedly urged evacuation. Although evacuation was mandatory for many shore communities, it was not universally heeded. Central New Jerseyans were advised to shelter in place, although public shelters were available. Shore respondents trusted nearly equally TV, radio, reverse-911, police and fire for this information . There were age-related differences, with trust in TV and reverse-911 decreasing with age, and trust in radio increasing . However, reverse 911 was important for all age groups. There was no significant difference in how different ages used the top 6 categories . --- Health and Safety Information Under the general category of safety, there were few differences in information sources. People obtained information before the storm from TV, radio, friends and the web (Figure . 1). There were, however, many other sources where subjects obtained information about their own safety . During and after the storm information choices were more limited due to loss of electricity; individuals used portable and car radios. Many respondents reported being isolated because of communication outage and limited travel, which was severely limited first by flooding and drifted sand and later by gasoline shortage. There were locational differences in where people obtained information about their health . Respondents from central New Jersey mainly obtained their information from the TV and web-based sources, while coastal respondents obtained their information from a range of sources. This largely reflects their longer period without electricity. Some communities went three weeks before people had electricity, and they relied heavily on radio, friends, and other sources. A full list of sources respondents gave to the open-ended question are shown in Table 5). --- Mold information One of the key problems following severe flooding along the New Jersey shore , was mold. This problem was greater for coastal respondents than for central Jersey respondents . There are two types of information individuals need about mold: health risks and effects, and what to do about preventing and eliminating mold. The appearance of visible mold was obvious to many respondents, and the average rating of shore respondents for health effects from mold in their homes was 4.03 out of a scale of 5 . For comparison, average shore respondents rating for water damage in their homes was 4.64. The sources of information shore respondents used for mold are presented in Figure 2. Friends and the web were the most frequently used sources. By the time shore respondents were allowed back into their communities and homes, many had access to the web. --- DISCUSSION --- Vulnerability and communication Densely populated areas may be particularly vulnerable to severe storms because of the effect of power and utility outages . The extended loss of electricity had extreme effects on medical care and facilities as some hospitals had to transfer patients to other facilities, academic research was disrupted, people were evacuated, and offshore radar systems were destroyed . The list of infrastructure damage is long, and many facilities had not yet recovered by 9 months. For the public, however, loss of electricity disrupted communication. In the aftermath of the storm, many respondents wanted to voluntarily evacuate, but needed information on where to go and how to get there. The relatively long period without electricity for most shore respondents was an unprecedented unusual event, and one that preparedness plans had not considered. Usual power outages are only 3 or 4 days long, and for smaller geographical areas of New Jersey, not the entire area. In the aftermath of Sandy, nearly everyone was without power for some time. During such a disaster, information transfer becomes critical; communication is essential about the storm itself, whether to evacuate and to where, how to learn of shelters, and where to find food, medical supplies, and other necessities . The new reality of such long periods of power outages, for large sections of a state, and for millions of people, require new strategies for "hardening" the electricity system, and redundant approaches for dealing with information transfer . Americans obtain much health information through television . However, communication has changed dramatically in the last two decades due to changes in the internet, expansion of web sources and social media, and the rapid increase of cell phones for the majority of the population; 91 % of Americans have cell phones . There is a growing cell phone-only population, particularly among the young individuals . Young adults are more likely than older ones to use social media . Further, there has been an increase in using the internet and cell phones as the source of health information . These changes suggest that web-access forms of communication and social media might play a major role in dissemination of information before, during, and after a disaster, and the present survey examined these issues. Surprisingly, although rather sophisticated satellite observations monitored the progress of Superstorm Sandy, and the distribution of power outages , actually monitoring and assisting information flow on the ground for affected areas, such as New Jersey, was difficult due to these power outages, evacuation and displacements of subjects, disruption of roads and bridges, and loss of mass transit. A clear need for the creation and implementation of a hurricane risk information plan is essential to improve health and safety and reduce risks and property damage. These information needs range from general and specific scientific information about a storm to emergency measures and societal needs . Preparing for future storms may well be improved by understanding the role of different communication modes that functioned effectively during Superstorm Sandy. Equally important, however, is achieving trust in the information. Many respondents doubted the dire predictions and remembered the warnings about Hurricane Irene in 2011 which produced more damage in central than coastal New Jersey. As often happens, the media played up the conflicts among prediction models, leading listeners to question the most severe predictions. --- Functionality of information sources Data gathered in the present study clearly indicate that TV and radio were the sources of information regarding safety, health risks, and evacuation routes before the storm. During the storm people relied on whatever source was functioning, and in many communities, web access and cell phones were not operating. Individuals in central New Jersey were without power and internet for an average of 6 days, and respondents along the coast were without them for 23 days and 29 days respectively . Length of loss of internet depended not only on local power outages, but on the resilience of the internet provider. Since power was out for less time for central Jersey respondents, the web could be used more quickly in these areas. Friends accounted for much of the information, mainly because respondents talked to neighbors and others living nearby. Finally, many towns had reverse 911 lines set up whereby they called town residents to keep them informed about the storm, shelters, evacuation routes, and other storm-related information. This relatively new form of communication worked only in places where either land lines or cell phones were still operating. It was also particularly effective before the storm hit, before there were power outages. Generally, TV and radio were the key sources of information. There were some differences in the information sources used as a function of location , type of information, and age. There were age-related differences, as might be expected, in information sources used. Reliance on radios increased with age, and use of TV and Reverse-911 decreased with age. Remarkably, police and fire forces were not generally used as sources of information, except for evacuation for respondents living along the shore. This partly reflects the inability of people to contact the police or fire, the necessity of police and fire to deal with emergencies rather than information flow, and the same loss of power for police and fire personnel. Finally, fire, police and other emergency personnel were dealing with their own households without power as well as with community health and safety. Responses thus varied as a function of distance from the coast, as noted by Trumbo et al. . The present study, however, suggests that a clear re-evaluation of the communication channels open to people before, during and after a severe storm, such as Superstorm Sandy, is necessary. While by their very nature, crisis and emergency risk communication is chaotic and uncertain, and equivocal , it is still essential to develop a strategy for both the messages, and the sources of information. Reliance on TV and radio were still critical sources of information for all ages in both central and coastal New Jersey. Yet despite frequent messages regarding personal preparedness, many respondents lamented that they had not really believed the apochryphal warnings and wished they had stocked up on batteries, flashlights, portable radios, fresh water and non-perishable food. Frequent messages admonishing subjects to assemble preparedness kits went unheeded. All the advances in cell phones, social media and the internet were not useful once power outages were extensive in time and space. Individuals could not charge cell phones or computers. TV was mainly used before Sandy hit, and after power was restored, while portable radio was used once power was out. The reliance on cell phones and the internet, which normally function, predisposed people to fail to prepare adequately for such failures. Many individuals did not have batteries for their cell phone, and could not use their car radios or charge their cell phones with the car because gas was at a premium . People were inventive; some subjects reported that they received news from TV, but the TV reports came to them via cell phones that still had power or via satellite phones . One person's information originated from Europe via a cell phone, and another from the Middle East. Others listened to their car radios because they did not know where other radios were or they did not have batteries. These data suggest that people used every method possible to obtain information, but were often not prepared to deal with the combined loss of electricity, cell phones, and the web coupled with severe limits on travel These results are generalizable to a large extent. However, it should be noted that this survey was a convenience survey of populations with different experiences, in different locations, but there is no reason to expect that it was biased with respect to information sources used. The fact that the two populations used mainly the same sources for information suggests a uniformity of available information sources and also a uniformity of lost channels during outages. Further, all surveys have some disadvantages. For example, random digit dialing telephone sampling is suffering because of the increase number of cellphone only users , and use of both cell phones and landlines leads to biases in the population that will answer the phone, or even have such phones. In the present study, subjects were approached, and nearly everyone was willing to answer the survey. --- Lessons learned for future research This survey was conducted under trying conditions, immediately following the biggest natural disaster faced by New Jersey residents in their lifetime. The disaster was faced not only by shore residents, but by inland residents because of the prolonged power outages and wind damage that made roads impassable for days to weeks. Further, it was not only an individual disaster, but a community disaster as well. There were several lessons learned from the survey as conducted. These include: temporal aspects of information sources should be examined in more detail , examine information sources for individuals as a function of whether they had power at the time, or not, distinguish the internet and social media sources more clearly, examine the effectiveness of reverse 9-11, the situations it was used in, and whether people followed this advice or not, and finally, separate the source from the method. The importance of separating the source from the method was not recognized at the start of the study, but became clear part way through, when it was impossible to change the questions. Sources of information include friends, neighbors, family, mayors, town officials, emergency service people , county or state officials, and the governor. The method of communication could be television, radio, internet, social medial, word-of-mouth, or other. The experiences of the investigators suggests that it might be useful to provide respondents with a table, and let them fill in a matrix of sources and methods for each concern . People were anxious to talk about their experiences, and readily looked at a list of environmental concerns to give their opinion. This suggests that they would fill out such a matrix. The questionnaire used in this study had several sections on demographics damage, evacuation behavior, safety concerns, health concerns, ratings of health and environmental concerns, and information sources. While this approach provides information on a wide range of responses and behaviors, it is more difficult to examine information sources in depth. Further, future researchers might consider conducting an information sources study at monthly intervals following a disaster to examine how trusted information sources shift over time. Such information could lead to time-dependent information strategies. --- Conclusions The sources of information used, and the sources available, depended upon the kind of information required as well as the availability of electrical power. Although some people had generators, these were not useful for many shore residents because the flooding made it dangerous or impossible to use them or because gasoline quickly became unavailable. Before the storm hit, subjects in both populations had access to all the information sources they normally used . The information they needed related to the severity of the on-coming storm, evacuation orders, evacuation routes, and preparedness. During the storm, power was out for most respondents, and the information sources available were severely limited; they required information on health and safety, evacuation and shelters. After the storm, many individuals still needed information on evacuation routes, because without power, heat or food, they needed to leave. People still needed information on health and safety for themselves and their family, on food spoilage and on sources of safe drinking water. They especially needed information on what items to take when they did evacuate. Since the period without power was much longer for shore respondents, the information gap was greater, and the potential information sources were severely limited. These timelines for information needs, and for available information sources, need to be integrated into any long-term strategy for dealing with disasters. The new reality is for more severe storms, with longer and wider power outages. The implications of this trend are important for communication. . 2011;31:190731: -1918. [PubMed: 21605150] . [PubMed: 21605150] Figure 1. Information sources used by respondents in central and coastal New Jersey within 100 days of landfall of Superstorm Sandy. These are the major information sources used and trusted. Figure 2. Sources for information on mold given by respondents in New Jersey within 100 days of landfall of Superstorm Sandy Responses of New Jersey residents following Superstorm Sandy. The question was "Who is your internet provider and how many days was service out?". Responses for Jersey Shore residents only to the question "Who do you trust most for information about Evacuation Routes?". Respondents could have more than one. Chi-square comparing age groups was 47.7 . Percent of respondents from Central New Jersey and the Jersey Shore that obtained safety information from the following sources during and after Superstorm Sandy. People often gave more than one response. Chisquare comparing the 2 study sites = 3.1 --- --- Author Manuscript Author Manuscript Burger et al. ---
Health and safety professionals, and the public, are interested in the best methods of providing timely information about disasters. The objective of this study was to examine information sources used for Superstorm Sandy with respect to the storm, evacuation routes, shelters, safety, and health issues. Respondents in Central New Jersey and Jersey Shore communities were differentially impacted by the storm. Jersey shore respondents had higher evacuation rates (47 % vs 13 %), higher flood waters in homes, longer power outages (average 23 vs 6 days), and longer periods without internet (29 vs 6 days). Electricity outages disrupted both sources and receivers of communication. Both groups obtained most of their information regarding safety from television, radio, friends and web/email. Information sources on health varied by location, with central Jersey respondents using mainly TV and the web, and Jersey shore respondents obtaining health information from the radio, and TV (before the storm). For information on evacuation routes, Jersey shore respondents obtained information from many sources, while central Jersey respondents obtained it from TV. Information on mold was largely obtained from friends and the web, since mold issues were dealt with several weeks after Sandy. The reliance on traditional sources of information (TV, radio, friends) found in this study suggests that the extreme power outages rendered web, cell phones, and social media on cell phones less usable, and suggests the need for an integrated communication strategy with redundancies that takes into account prolonged power outages over large geographical areas.
Introduction The history of Islamic activism in Indonesia, driven by Muslim youth, cannot be separated from the events of "jilbabisation" in public schools. The extraordinary pressure of the New Order meant that veiled students in public schools could not find room for compromise. There is only one option for "jilbabers": continue to go to school without wearing a headscarf or continue to wear a headscarf by moving to a private school. However, the New Order government's repressive actions against the "jilbabers" did not make their struggles recede but instead raised the spirit of the campus Islamism movement to fight from below. Several large and well-known campuses in Indonesia, such as Institut Teknologi Bandung , Universitas Indonesia , and Universitas Gadjah Mada , have become fertile breeding grounds for this movement. The climax was when the Mujahid Da'wah Exercise /Latihan Mujahid Dakwah was held in 1974 which was initiated by a prominent figure from the Bandung Islamic Student Association/Himpunan Mahasiswa Islam named Imaduddin Abdurrachim with a focus on teaching the Qur'an and Hadith, and more specifically related to the obligations of Muslim women wearing a headscarf. Since then, more and more Islamic activism has sprung up on several campuses in Java, such as IPB, by establishing the Islamic Spiritual Board/Badan Kerohanian Islam . In Jakarta, the Arief Rahman Hakim Mosque is used as a study base for UI students. Likewise, the Jamaah Salahuddin emerged in Yogyakarta, which UGM students drove. In the end, the spirit of Islamic activism extends to campuses in various areas, such as in Surabaya and Semarang . It began to hit Islamic students. Since then, LMD alumni have spread to state university campuses, in line with the issuance of SK.No.100/C/Kep/D/1991 on February 16, 1991, which allowed students to wear clothes based on their beliefs, there was a fever of headscarves. This fever also intensified after a change in the political situation that was more inclined to the "right" marked by this condition which eventually led to the uproar over the jilbab identity -which later became known as the "jilbab revolution" movement -which not only emerged at the tertiary level but also in state high schools. Headscarves are increasingly widespread in various regions; even now, it has become an identity that dominates the school's public space. The phenomenon that occurred in one of the State Senior High Schools in Yogyakarta, for example , requires students to wear jilbab and long skirts in the school environment. Most female students also wear a large jilbab with a combination of long skirts up to the ankles, while the boys wear "congklang" pants. Islamic practices in schools are also increasingly prominent, such as the separation of men and women in student council and extracurricular meetings, and an Islamic orientation in the form of MABIT for new members in certain extracurricular activities. This illustration indicates that the Islamist movement has colored the spaces in public secondary schools with Muslim youth as the main actors. The influence of the Islamist movement on Muslim youth in public high schools is increasingly visible with the emergence of Rohis activism, student organizations that are intense in religious studies, and school activities. The emergence of Rohis in Najib Kailani's study is allegedly not only a school da'wah movement and a political movement. However, it is more closely related to the "moral panics" phenomenon that hit Indonesian society after this country invaded Western and East Asian pop culture . There is a sense of concern for the "ghost" of pop culture among teenagers who are trying to find their identity and identity. Efforts to ward off this are by intensifying Islamic da'wah among students and establishing school da'wah pockets. The slogan "Islam is the right solution" became the foundation for Muslim youth to get out of the "worry" over the hegemony of Western culture. Based on these slogans, they eventually metamorphosed into an Islamic movement that manifests in symbols, language, slogans, and other Islamic activities. The presence of Rohis in Indonesia in the 1980s started from the desire and effort to provide answers and solutions to problems related to the perceived lack of Islamic insight for Muslim students because religious education lessons in schools were considered very limited. This spiritual activity is based on the Decree of the Minister of Education and Culture of the Republic of Indonesia Number 0204/4/1984 concerning the Improvement of the Curriculum for Senior High Schools. Regulation of the Minister of Religion Number 211 of 2011 concerning Guidelines for the Development of National Standards for Islamic Religious Education in Schools states that one type of PAI extracurricular activity is a spiritual activity that functions as a mentoring and sharing forum to strengthen and deepen Islamic material in schools . Therefore, the presence of Rohis is essential to serve as a forum for deepening Islam through extracurricular activities at school. The primary purpose of Rohis being formed is more based on establishing a forum for teaching, preaching, and sharing Islamic knowledge. Rohis also has a management structure similar to that of various organizations, such as a student council consisting of a chairman, deputy, treasurer, secretary, divisions according to the needs of each organization, work programs, articles of association, and by-laws. . Rohis has a very strategic and massive role in constructing the Islamic identity of Muslim youth. It is shown by the many activities, programs, symbols, and styles and behaviors of the Rohis activists, who are always based on Islamic values, such as the emergence of the da'wah club movement, tadarus activities, Islamic Activity Community/Civitas Aktivitas Islam , Muslim alumni communication forums, systematic studies, and sisterhood/girlhood , and Mrs. NR . The Rohis movement is part of the school's extracurricular activities and an arena for the school's da'wah movement. Rohis activists are the driving force, known as School Da'wah Activists/Aktivis Dakwah Sekolah . Besides, there are also roles from various other agencies, such as teachers, alumni, and partners . The strategy of the Rohis da'wah movement is outlined in the dual function of the Rohis by using two coaching methods, namely; first, fostering "syakhsiyah Islamiyyah" or Islamic individuals who direct their agenda to foster a cadre of Muslim students to become superior individuals in the fields of science and faith. Second, the formation of jami'ah al-Muslimin or associations of Muslims. In this case, Rohis is a gathering place for Muslim students in an Islamic community. it aims to internalize further Islamic school teachings . Rohis' success in building an ideal image as a Muslim youth with "piety" has become an inseparable part of this community. A Muslim teenager who is intelligent, accomplished, has social concerns, and Rohis activists represent the religious. This image of "piety" is not without reason but is supported by facts showing that the subjects asked to carry out this mandate are Rohis activists in almost all religious affairs in schools and madrasas. As happened in MAN 1 Yogyakarta, not all of which are members of the Rohis activists, it is clear that Rohis is involved in every agenda of activities with religious nuances. In this way, Rohis activists are considered to have a high enough power of influence to color schools and madrasas. It is supported by an Islamist culture built in the spirit of interacting with one another. Arabic terms thick with Rohis activism have become identities easily recognizable in the public sphere. The terms Ikhwan, Akhwat, Halaqah, Daurah, and Mabit, are terms that are not foreign to them. As Rohis did at SMA 5 and MAN 1 Yogyakarta, the call for Ikhwan and Akhwat is always used in study forums. The piety shown by the Rohis activists in the school's public space shows that the Islamism that develops in Rohis activism is still quite thick with the understanding that Islam is identical to Arabic, both in the way of dressing, customs, and the use of language in communicating and interacting such as Ikhwan, Akhwat, Akhi, Ana, Antum, Afwan, Annisa', Adab Syuro, Hijrah, Jilbab, dan Jamaah . The use of Arabic is also evident in Rohis' most typical program, namely mentoring or Halaqah, which is a place for internalization and regeneration, and other supporting programs such as Mabit , Ta'lim , and Daurah . In addition to the program, the symbols in the Rohis logo are the same. Both MAN 1 and SMAN 5 Yogyakarta use Arabic. In addition, the name Rohis is also synonymous with the mosque's name in schools and madrasas. In MAN 1, for example, associating the name Rohis with Masjid al-Hakim, it becomes "Rohis el-Hakiem." At SMAN 5, the name Rohis was also attached to the Darussalam Mosque, thus becoming "Rohis Darussalam." This attachment of Rohis' piety to Islamic activism is often considered to lead to forms of exclusivism, even to the seeds of understanding radicalism. On the other hand, Rohis activists, as urban Muslim youth moving towards the middle class, want to show their piety with Islamic religious symbols, such as jilbab, decker, and social services. Beta says everything the middle-class Muslim community does is a form of expression. They want to show freedom amid the stereotype that Rohis activists tend to be exclusive and radical, or in Manuel Castells' language, they are called "resistance identity." They are trying to build identity politics amid discrimination in public spaces that tend to legitimize the identity of Rohis' "active piety" to perpetuate the Islamism movement among Muslim youth in schools and madrasas. Rohis cannot be separated from the actors born from the new Muslim generation as Islamic activism, which is the driving force of da'wah in secondary schools. Becoming a Muslim teenager growing up and developing a "Muslim lifestyle is the new cool" cannot be separated from the essential everyday formative experiences experienced by this generation, such as the socio-political climate conducive to Muslims since the early 1990s and the fall of Suharto in 1998. Democratic elections in 1999, where Islamic parties got a breath of fresh air, the Bali bombings 1 and 2, the rise of racially motivated social conflicts, the digital revolution, and social media, and the rise of Islamic pop culture as a factor in its formation and development . Therefore, Naafs's studies presented Islam as the antithesis of westernization . However, subsequent studies show how 'contemporary Indonesian Islam is synthesized with the lifestyle characteristics of modernity, which ultimately gives birth to a hybrid Muslim youth culture. Rohis as an arena for the Islamization of Muslim youth indeed cannot be separated from the perspective, attitude, and behavior of Muslim youth who are growing as a generation of middle-class Muslims. So, the right term to describe Muslim Youth activism in Rohis is "Muslim, Young, and Modern." The development of Indonesian Muslim youth towards religiosity is increasingly visible when entering 2010, along with the growing trend of jilbab on the national fashion stage. This phenomenon was followed by a wave of Hijrah trends among artists and other young people. Undoubtedly, Hijrah, interpreted as a change for the better, has become a lifestyle. The Rohis context, for example, is not only a forum for gathering Muslim youth in religious activities at school. Rohis also has the main target of da'wah, which targets the logic of the Muslim "market," especially among Muslim youth. The market logic of Muslims targeting the segmentation of Muslim youth is not just a market, numbers, numbers, and merely carrying out economic principles, but what is more important is how to incorporate sharia values and religious spirit as well as global culture in every dimension of da'wah that Rohis drive in schools and madrasas. According to Noorhaidi Hasan, Muslim youth's Islamic activism is not only related to issues of religious and moral ideals. Socio-economic factors also color this movement. The lack of job opportunities makes them frustrated, and they look at the future with "gloom" and "murk." Amid these conditions, they are easily carried away by the "religious utopia" by joining Islamist groups such as FPI, HTI, and the Salafi movement. However, the character and characteristics of teenagers who want to be open, dynamic, and responsive are challenging for Muslim youth activism. The presence of popular culture and globalization makes them unable to escape from the space of Western hegemony, which they often criticize. A real example is that they still wear the jilbab but drink Coca-Cola, listen to pop music, play gadgets, and go to the mall . This condition illustrates the desire of Muslim youth to maintain their Islamic identity, but at the same time without abandoning their modern identity. Thus, it can be said that Muslim youth activism has developed and changed. They seem to be trying to negotiate Islamism and modernism. Rohis activism does not only exist in the political sphere, which seeks to Islamize Muslim youth in schools and madrasas. His activism also points to the rise of a generation of urban Muslims as a middle-class generation that Jason Burke describes as "educated professionals with a modern outlook." They are also pious and socially conservative and have the view that Islam plays an important role not only as a personal belief but also in public life, where Islam is articulated as a form of moral guidance, a marker of identity, political ideology, and urban lifestyle . It is where the uniqueness of Muslim youth-style Islamism is. Identity hybridity becomes inevitable. Pam Nilan sees this current Islamic condition in Indonesia as a form of synthesis with several characteristics of a modern lifestyle, urbanization, consumption for consumption purposes, dependence on technology, extended periods of education and training, longer marriages, and expansion of the Preferences Activism of Islami Preferences Activism of Islamic Spiritual in Schools and Madrasas in Yogyakarta… middle class. Quickly form youth following the market and birth to specific Islamic cultural products and trends . Islamism is not a static concept but dynamic. Islamism in Indonesia today is driven by urban Muslims from big cities such as Jakarta, Bogor, Bandung, Yogyakarta, and Solo. They do not simply want to return to classical Islam and oppose modernity. However, it seemed like he wanted to embrace both of them. One of the essential agents of Islamism is young Muslims, who actively organize religious activities, and political mobility and use religious symbols in public spaces . Rohis Islamic activism is not just a school proselytizing movement that is always associated with issues of Islamism, fundamentalism, radicalism, or even terrorism. More than that, a shift leads to efforts to negotiate religion with modernity as another form of dynamics shown by the younger generation of Muslim Rohis. This shift occurs because of its contact with modernization and globalization, which is inevitable. As a result, Rohis created its uniqueness with Muslim youth-style Islamic practices, which tend to be more fluid, slang, and trendy. The results of Noorhaidi's research in mid-January 2018 also show that the millennial generation generally accesses Islamic literature based on five styles, namely "literature with jihadi, tahriri, salafi, tarbawi, and popular Islamism patterns." Popular Islamism-style literature attracts the most readers, while jihadi literature has the slightest interest. Why is that? Because millennial Muslims need an illustration of how to become Islamic amid technological developments, such as fashion needs and lifestyles. It is accommodated through popular Islamism literature . Yasraf Amir Piliang said this widespread imagination phenomenon is built on at least four domains. First, the popular way of thinking is characterized by quick thinking to get pleasure. Second, widespread communication is characterized by the phenomenon of da'wah decorated with popular culture, language, actions, and appearances, as da'wah often appears on television screens accompanied by comedy and jokes. Third, popular rituals are generally carried out by following the paradigm of commodity-motivated popular culture by considering social differences, prestige, class, and status principles. Fourth, popular symbols are characterized by appearance, whether clothing or accessories, that emphasize the effect of fun, symbols, status, themes, prestige, charm, and various other popular tastes. For example, following the styles and models of ustaz/ah, Kiai, and Dai, who become "trendsetters" and create a new lifestyle . Thus, the lives of Muslim youth, as seen from Rohis' activism today, show a reasonably strong intersection between religion and popular culture. This intersection gave birth to not only the phenomenon of the inclusion of mass cultural values in Islam but also the emergence of Islamic da'wah in popular media and new styles. It proves that something considered separate and contradictory is finding a way to negotiate and collaborate between pop culture and Islam. It represents changes in Islamic culture among Muslim youths who form hybrid Islamism by negotiating between popular culture and Islamic observance in earnest without having anyone dominate each other. --- Methods This research method uses a qualitative case study. The subjects of this research are Rohis activists in MAN 1 Yogyakarta and SMAN 5 Yogyakarta. This study collects data through in-depth interviews, participant observation, and documentation. Data analysis uses the Miles and Huberman model with interactive analysis through data reduction, data presentation, and conclusions. This study uses a sociological approach with symbolic interactionism. One of the basic premises of this school is that humans are conscious and self-reflecting beings who actively shape their behavior . In addition, humans are purposive beings who act in and against situations where they want to reflect the identity embedded in them and want that identity to respond to the chaos that occurs . This research is also guided by the theory of the Muslim generation, as well as theories of political sociology such as identity politics and post-Islamism. --- Results Rohis Islamic activism at the senior high school level is quite interesting. Two educational institutions in Yogyakarta, SMAN 5 and MAN 1, are representatives of schools and madrasas that have religious activities driven by Rohis activists and are both under the auspices of the Student Council . However, the pattern of Rohis recruitment in the two institutions is different. SMAN 1 applies the obligation for all students of class X to become members of Rohis, while for students of MAN 1, entering into Rohis members is only an option. However, the uniqueness of both of them has the characteristics of activities that characterize the style and style of young people, which is more fluid and slang. The age of students in high school who are in the process of finding their identity, including in matters of religion and belief, also influences the Islamic identity that appears on the surface, which is unique to the youth style. As a community driven by Muslim youth, several activities carry the identity of the Rohis as a school da'wah movement and, at the same time, become teenagers who want to show modernity and remain "slang" teenagers, some of which appear in the realms below. --- Religious Events Rohis Muslim youth infatuated with Islamic activism are generally an urban community growing into a middle-class society. Most have affluent family backgrounds, adequate purchasing power, decent investment ability, and a high spirit of giving . Especially for the spirit of giving can be seen from the current Rohis activism, which organizes religious, and social events such as Social Service. This activity is carried out by SMAN 5 at the end of Ramadan. They sent zakat fitrah assistance from students and teachers to residents around SMA Negeri 5 and other areas deemed in need. Other social activities are sharing sacrificial animals in several areas in Yogyakarta during Eid al-Adha, such as the Gunungkidul and Kulon Progo areas, and some underprivileged residents around the school. This activity is usually not just a social activity, but there is a "recitation" agenda at the location where the Social Service takes place by presenting a local cleric. Not inferior to SMAN 5, religious events are also lively and carried out by the Rohis MAN 1 Yogyakarta activists. The social service, which is held for 3 days, is carried out in the month of Dzulhijjah and takes place outside the school . Among the activities are the distribution of sacrificial meat, cheap basic food packages, free medical treatment, and a cheap bazaar . To organize these activities, Rohis MAN 1 raises funds only from internal circles, not asking for donations from outside parties. The enthusiasm of the parents is evident by giving donations in large amounts. According to Mr. NWL's narrative; "Even from this activity, we can leave funds to be included as community funds which can be used at any time for other activities, so all of it is from the parents' donations ma'am" . The remaining community funds are then used for the "we can we share" activity, a social activity in the Rohis program that aims to develop the habit of social behavior and social care, among others. The charity and giving activism shown by Rohis MAN 1 was also seen at the annual event led by the sisterhood, namely the study of sisterhood and the donation of 1001 deckers. This activity is carried out once a period by inviting all members of the DIY Rohis accompanied by the agenda of distributing deckers for participants on the streets. When the writer asked the reason why he had to "deckker," Ms. NBL, as the head of the akhwat, answered; "Yes, because the decker is a symbol to cover the genitals for women, ma'am, so yes, we hope that by distributing this decker later, many Muslim women will want to cover their genitals." . Thus, the symbol of "alms decker," which is part of fashion for Muslim women, is not only a symbol of Islam to cover the genitals but also becomes part of the lifestyle of modern Muslim women who are slang and trendy. --- Theme of Study The same trend also occurs in selecting the study theme raised in the Islamic activities of the Rohis. These themes are thick with Islamic nuances such as the themes of moral creed, Islamic history, and Islamic youth lifestyles around the world of love, dating, fashion, almsgiving, and how teenagers prepare themselves in the face of modernization and globalization. Such themes are evident in the study of sisterhood. One example is the study conducted by Rohis MAN 1 Yogyakarta, on Sunday, February 18, 2018, in the 2nd-floor hall. More than 200 young women attended the study program from 09.00 WIB to 12.00 WIB . The study took the theme "my slang does not hinder my hijrah" by presenting two resource persons from the Advisor for the Muslimah Smart with Islam Yogyakarta Youth Community, Ahsani Rahmi, and the Chairperson of PC Djdzman Al-Kindi, Yogyakarta City, Repa Sepnita. According to NA, a class XI Language student assigned as the head of the organizing committee, today's young women have faced the times' challenges. Model, lifestyle, and fashion trends have demanded that Muslim women be wise. He says a wise attitude does not lag behind the new trend. He said, "There are many models of clothing and styles of dress that are in great demand by young women but are not syar'i. So, the solution is yes, we are slang but still Islamic". It was also confirmed by AM, a class XI IPS 3 student who serves as the head of Rohis. He said, "so that young Muslim women are good at choosing trends, and not just following along. Let us slowly become a real Muslimah" . Almost the same as Rohis MAN 1, the themes raised at SMAN 5 are also not far from the problems of youth's life, such as "kids nowadays" and "where do I put my love?" although there are also themes related to "the doom of the grave" and "the best women for Jannah" This was also confirmed by GN, one of the students of SMAN 5 Yogyakarta. He said his favorite themes were youth life, Islamic history, and not forgetting the Muslim lifestyle. By looking at the themes of the study raised in Rohis activism, it can be said that the nuances of the lives of Muslim youth remain visible, despite efforts to maintain Islamic values. --- Program/Division As a Muslim teenager who wants to show his modernity, "slang" is powerful among Rohis activists at school and in madrasas. At MAN 1 Yogyakarta, for example, the term "slang" is widely used for work programs such as "Jubbah" , which schedules activities every Friday by reading the Koran Surah al-Kahf. There is also a "lotis party" program used as a forum for gathering and sharing among the sisters, while for the Ikhwan, the agenda for this kind of activity is included in the "futsal fun" program. Meanwhile, for the study of mentoring, MAN 1 Yogyakarta packages its program with the term "coffee" or Talking about Faith, which contains studies filled out by alumni and several teachers or dormitory supervisors . Meanwhile, SMAN 5 Yogyakarta prefers to use terms close to the Palestinian state. This term can be seen from the names of program divisions such as the "Gaza" Division, the "Hamas" Division . In addition, the activities Rohis does to fill the boredom of the "Amar ma'ruf nahi munkar" da'wah activities are lutisan, playing ping pong, futsal, cycling, and many more. Rohis of SMAN 5 Yogyakarta later knew this cycling activity by the term "DBS," or an abbreviation of Darussalam Bicycle-an Sareng-Sareng, which was attended by Rohis members, alumni, and teachers. Although the theme is DBS, its activities cannot be separated from the built Islamic nuances. It can be seen from a series of events that include a "training motivation" agenda whose theme is related to "ukhuwah" . From this, it is clear that Rohis' activism preference, on the one hand, maintains Islamic values and faith that is firmly held as a form of "Amar ma'ruf nahi munkar," but on the other hand, his activism cannot be avoided from the lifestyle of teenagers who are identical with modernity and fun. According to Bennett, the hybridity of contemporary Islamic youth culture in Indonesia is not the result of an arbitrary and unintentional process. On the other hand, resistance to the hegemony of globalized western culture and the simultaneous desire not to 'get behind, but to create something of their own, in the end, gave birth to a uniqueness that is different from the others. Nine years of Nilan's research is increasingly convincing that young Indonesian Muslims who are religiously devout want to be recognized as modern. Middle-class youth have free time, money, and cell phones and are internet savvy. They know much about global youth culture and glimpses of the 'possibility of life' that such things offer. They hate Western values but do not see themselves as backward or old-fashioned. They frame their identity not only about the products and trends of global youth culture handed down from the West but also about the influence of global progressive Islam in all Muslim countries. Therefore, it can be said that identity formation is local, but the shaping factors that influence this local process can come from sources in other parts of the world . The presence of Rohis as a forum for Islamic activism for generations of devout Muslims in schools and madrasas is finding the momentum of freedom and celebrating faith confidently in the school's public space. A new identity emerged as "Hybrid Islamism" by presenting a "third space" as a form of negotiation between maintaining an identity as a generation of devout Muslims and not leaving modernity. --- Discussion Supporting the previous findings, Rifki Rosyad that the Islamic Awakening is a global phenomenon throughout the Muslim world but has a unique form in each place. Unlike the Islamic revival in the Middle East, the Islamic revival in Indonesia has not yet manifested itself in radical political activism and revolutionary actions. There is a tendency towards revolutionary political activism, but its strength is small. The general tendency is to make Islam the basis of ethics, morals, culture, and color and fill established social and cultural structures with Islamic spiritual and moral content . The birth of Rohis as a phenomenon of Islamic activism in schools that moves Muslim youth in Indonesia is allegedly closely related to the phenomenon of "moral panics" and as a form of resistance to Western pop culture that invades and attacks this country, especially among young Muslims. Therefore, the existence of Rohis is expected to be able to fend off the onslaught by intensifying da'wah among students and even becoming a political movement in schools . Najib said that Rohis, as The school's da'wah movement, is not only considered a pure form of Islamic symbols but is also alleged to be an agent of the transmission of certain ideologies. This view is reinforced by a study conducted by the Research Team of the Institute for Islamic and Social Studies/Yayasan Lembaga Kajian Islam dan Sosial and the Center for Southeast Asian Social Studies/ Pusat Studi Sosial Asia Tenggara in collaboration with the Center for Religious & Cross-Cultural Studies UGM Yogyakarta. Through Rohis mentoring activities. One example is Rajawali High School, a public school in the Yogyakarta area. This high school is allegedly adopting the thoughts and studies of Rohis mentoring from Egyptian Islamist ideologies such as Hasan al-Bana and Sayyid Qutb, as well as several Islamic readings that lead to popular youth Islamic magazines such as El Fata and Annida . Preferences Activism of Islami Preferences Activism of Islamic Spiritual in Schools and Madrasas in Yogyakarta… However, in the development of Rohis, which is thick with the lives of teenagers who are fond of change, the Islamism that developed later no longer had the nuances of "right" Islamism but led to a more fluid and slang Islamism. It cannot be separated from the existence of Muslim youth, who are identified as a network society that is spun in the advancement of information technology. Muslim Rohis youth cannot avoid conditions where society has a reasonably high dependence on technology. Even it has become a part of their lives. The information technology revolution that is quite massive has given rise to a new society, culture, and economy. In order to survive in a climate of increasingly fierce global competition, as Castell said , the public must have access to and the ability to manage and utilize information and information technology. The generation of Muslim Rohis teenagers who are pretty thick with the world of information technology inevitably has to "negotiate" with modernity and experience a shift from activism that leads to a dogmatic form of Islamism towards Islam that is more flexible and slang, combining obedience and modernity. --- Conclusion The identity of piety displayed socially by Rohis is an interesting phenomenon because it is in Indonesian urban communities' development and economic establishment. However, as a generation of Muslim youth who cannot escape the currents of modernization and globalization, Rohis activists also own and use cell phones, go to malls, and like to listen to Western songs. They also like to listen to lectures via YouTube and Instagram. The topics of the lectures that are loved include Islamic themes, morals, stories of friends, and Muslim lifestyles. That way, between the piety that is raised socially and lifestyle becomes a practical need for Rohis youth to show their self-perception as Muslim and to become a growing middle generation to represent the younger generation, slang, and religion. This intersection gave birth to the phenomenon of mass cultural values in Islam and the emergence of Islamic da'wah in popular media and new styles. It proves that something considered separate and contradictory is finding a way to negotiate and collaborate between pop culture and Islam, pleasure, and piety. --- Data availability statement The datasets generated during and/or analyzed during the current study are available from the corresponding author upon reasonable request. --- Declaration of interest statement The authors declare that they have no known competing financial interests or personal relationships that could have influenced the work reported in this paper. --- --- Author contribution statement The author contributed to this work at each stage of research and wrote research reports.
Purpose -The existence of Rohis in schools and madrasas is often imaged as a movement for Islamization and school da'wah. However, globalization and modernization inevitably bring new directions for the next Rohis movement and is evident in its various activism. This study aims to determine the preferences of Rohis activism in schools and madrasas that have experienced a shift from Islamism "right" towards popular culture. Design/methods/approach -This research method is a qualitative case study. The subjects of this research are Rohis activists in MAN 1 Yogyakarta and SMAN 5 Yogyakarta. This study collects data through in-depth interviews, participant observation, and documentation. Data analysis uses the Miles and Huberman model with interactive analysis through data reduction, data presentation, and conclusions.The results of this study indicate that the Rohis' activism preferences appear in the spaces they create as a form of negotiation between obedience and modernity, including manifesting in the form of religious events, the theme of the study, and the name of the program/division. Research implications/limitations -The implications of this research in the world of education provide insight and views that modernization and globalization cannot be avoided, especially for Muslim youth who are members of Rohis. Practical implications -This research shows that school policies are more progressive and responsive to changing times.
Introduction The American Library Association has affirmed democracy, education, diversity, intellectual freedom, and social responsibility as core values of librarianship. While social justice is not explicitly recognized as an ALA core value, it is increasingly pertinent to and meaningful for those engaged in the library and information science and services professions, including practitioners, researchers, educators, and library stakeholders. Sergio Chaparro-Univazo writes that "the fight for social justice is a task related to most disciplines of knowledge," including LIS . A growing number of members in the LIS community have responded to the call for engagement with social justice in professional practice, research, education, and theory development in addition to actively promoting diversity, inclusiveness, community building, communityled librarianship, and greater representation for under-represented communities and groups . Other scholars such as Johannes Britz frame important issues pertinent to LIS such as information poverty as a serious moral concern and "a matter of social justice" related to social responsibility . In their paper "A Practical Framework for Social Justice Research in the Information Professions," Mehra, Albright, & Rioux highlight methodology as a key social justice element and state that "a longer term [research] goal is to evaluate research methodologies for adaptation to social justice issues" . Much social justice research methodology is firmly rooted in a rights-based agenda and situated in a transformative research paradigm that arose in response to the perceived inadequacy of interpretivist and constructivist approaches in addressing issues of power, social justice, discrimination, and marginalized peoples . To explore and uncover ways in which social justice is enacted, embodied, supported, or not supported by LIS researchers and practitioners, a variety of research methodologies and methods have been employed, including content analysis , ethnography , and surveys ; in terms of theory development, Kevin Rioux has initiated work on a social justice metatheory. Social justice reflects movements that are concerned with egalitarianism, social relations, representation, and balance of power; its study requires heterogeneous methodologies and approaches; and theoretical orientation and development are important considerations . In this article, discourse analysis is introduced as a valuable approach for the LIS community to employ to investigate problems and issues, including theoretical problems relating to LIS and social justice. Discourse analysis is not only a method but also a highly interdisciplinary field of study in which researchers use different approaches in their analyses by drawing upon various methodologies and methods, theoretical frameworks, and disciplinary backgrounds . At its core, discourse analysis is a domain of scholarly practice concerned with how language generates, constitutes, and constructs identities, reality, and social relations; how language is used to perform social action; and how power is reproduced, construed, perpetuated, and legitimated in society through talk and texts . The two discourse analytic approaches discussed in this article are discursive psychology as developed by Jonathan Potter and others , and critical discourse analysis as developed by Norman Fairclough . Whereas discursive psychology examines how language is used for creating factual descriptions of "objective reality" and how these factual descriptions then perform social action , critical discourse analysts take an explicit position in their work and prefer methodologies that are consistent with the interests of the social groups in which they engage and with methods that do not infringe upon the rights of the people they study. For critical discourse analysts, methods are often chosen so as to contribute to the social empowerment of dominated groups . Discourse analysis offers a rigorous approach to examining social issues and problems, social inequality, domination and related phenomena, contextually situated discourse, and the role of discourse and communication . All of these are potential topics of concern for those engaged with or interested in social justice. This article provides an overview of critical discourse analysis and discursive psychology, two discourse analytic approaches that are conducive to exploring the intersections between LIS and social justice. --- Methods of Analysis This article explores the feasibility of using critical discourse analysis and discursive psychology as methodological approaches to examine social justice in LIS. First, the theoretical development of social justice in LIS is discussed. Next, the epistemological, ontological, and theoretical underpinnings of critical discourse analysis and discursive psychology as appropriate methods or methodologies to explore social justice in LIS are presented and the goodness of fit of discursive psychology and critical discourse analysis with Rioux's five principles of social justice metatheory are analyzed. Lastly, suggestions for using this method or methodology in LIS-oriented social justice research are offered. While nonempirical studies are much less common in LIS research, the methodological approach used in this article is similar to that taken by Bernd Frohmann and John Budd . In his article, Frohmann argues that Foucauldian discourse analysis is a useful, although often neglected, method in LIS. He argues that because LIS theory itself is composed of "serious speech acts," LIS theory can act as a dataset of which important questions can be posed and subsequently investigated using a discourse analytic approach. Frohmann states that a Foucauldian discourse analysis allows those in the field of LIS to pose questions regarding the discursive constructions of information, its uses, and its users, and he uses as examples three prominent discourses in LIS: Dewey's technocratic discourse, Ranganathan's facets, and the discursive construction of information users and needs. Conversely, Budd analyzes the potential of conversation analysis and social discursive practices to investigate research problems in LIS. Budd demonstrates how conversation analysis, as a method or methodology, can be used to analyze reference interactions and professional mediation. He then examines how social discursive practices have been taken up in LIS to investigate institutionalized discourse and the theoretical foundations of the field. In terms of methodology, both Frohmann and Budd explore the epistemological, ontological, and theoretical underpinnings of various approaches to discourse analysis and advocate for the use of discourse analysis-and in Budd's case, to advocate for conversational analysis as well-as a method in LIS by providing examples of its application to LIS and offering suggestions or questions for future research. This article is structured in a similar fashion. --- Literature Review Social Justice in LIS It is beyond the scope of this article to define social justice in extensive detail, but it is important to situate and highlight relevant principles and theories of social justice in order to understand its development and applicability to LIS. Ideas about justice and social justice have been debated since the fourth century BCE when Aristotle, the famed Greek philosopher, argued that situations and communities are "just" when each individual receives benefits from society according to his or her merits or virtue . Today this principle of justice is known as "justice as deserts." John Rawls, in his book A Theory of Justice , defines justice as fairness and suggests that justice entails two principles: "First: each person is to have an equal right to the most extensive basic liberty compatible with a similar liberty for others. Second: social and economic inequalities are to be arranged so that they are reasonably expected to be to everyone's advantage" . Other scholars suggest that there are additional social justice principles: The rights or entitlements contingent on membership in a society; deserts in which society monitors who receives these benefits; needs as a criterion used to determine distribution of resources; and equality, which is inexorably linked to the principle of deserts-who receives benefits, and why? . Social justice theories, then, broadly align along three areas: Determining the role of the state in providing access to and distributing resources ; Determining what resources and services members of society are entitled to receive based upon need or merit ; and Determining the role of the state in distributing equal access to resources for all members of society . Central to contemporary definitions of social justice are ideas about distribution of goods and resources, legal notions of justice , and the concept of justice itself-preventing harm and demanding treatment that respects humanity. In A Theory of Justice, Rawls offers another important contribution to the theoretical development of social justice because he powerfully resituates social justice into a moral framework , while simultaneously highlighting the centrality of social institutions in enacting justice when he states that "justice is the first virtue of social institutions" . While Rawls does not specifically mention libraries or any other social institution in this passage, its applicability to libraries is evident. Furthermore, because LIS professionals are situated in social institutions, and they are tasked with serving all communities, justice is an inherent professional concern even though not always made explicit or manifested in practice . Janke suggests that social justice is a concern for librarians because "all parts of a community are entangled" in social institutions such as libraries, and that it is "the obligation of librarians to know their values and act on them" . Mehra, Rioux, & Albright , writing within a LIS context, define social justice similarly to Rawls: "a society in which individuals and groups are treated fairly and receive an equitable share of all the benefits of society" . The authors go on to suggest that while social justice is a foundational underpinning of library and information studies, this is not often made explicit in LIS research literature or professional literature. There are several reasons for this omission. Historically, libraries have often reflected the values of those in positions of privilege . Pateman & Vincent write that "public libraries [were] hijacked by the middle classes who came to dominate both the running and the use of library services," and that "equity is not embedded in our professional culture and sometimes excellence and professional standards are used as an excuse or smokescreen for not pursuing social justice objectives and outcomes" . Furthermore, since the 1980s, and in both the United Kingdom and North America, libraries across all sectors have been subjected to many financial policy decisions made by governments that have often undermined librarians' ability to provide equity to all library patrons . At the same time, LIS professionals, in their mandate to provide service, have themselves determined what their patrons' information needs are and what information, resources, and services are available and to whom . However, in recent years, and particularly in a community-led librarianship model, LIS practice has shifted in order to be more inclusive and to share power more broadly. Pateman suggests that public libraries move to coproduction; that is, library users are not treated as "mere consumers of 'choices' provided from above by library professionals. Instead, power and resources are shared with local communities" . In terms of LIS research, the paradigm in user-centered research has turned from "the user in the life of libraries" to "the role of the library in the life of users" . In addition, many LIS researchers and practitioners use inclusive, participatory research methods and practices such as community engagement and action-based research that allows community members and individuals to shape, guide, and participate in research relevant to them . At the same time, the increasing use of social theory in LIS affords the opportunity to reflect upon and interrogate traditional understandings, values, practices, and ideology in LIS . While this academic and professional work is not always explicitly tied to social justice, it demonstrates the growing awareness of and need for collaboration among patrons, practitioners, and researchers in order to deepen our understanding of local communities and library stakeholders, the broader social and political context of libraries, and the changing roles of libraries in the twenty-first century. Furthermore, among LIS researchers, greater attention has been paid to using and developing theory and metatheory with Rioux developing a social justice metatheory. The following are Rioux's five underlying assumptions of social justice for LIS: • All human beings have an inherent worth and deserve information services that help address their information needs. • People perceive reality and information in different ways, often within cultural or life role contexts. • There are many different types of information and knowledge, and these are societal resources. • Theory and research are pursued with the ultimate goal of bringing positive change to service constituencies. • The provision of information services is an inherently powerful activity. Rioux's metatheory is nascent, as his title "Metatheory in Library and Information Science: A Nascent Social Justice Approach" indicates, but it provides a starting point to frame the "fundamental set of ideas about how phenomena of interest in a particular field should be thought about and researched" . Rioux's assumptions of social justice work on the macro-, meso-, and micro- levels by calling attention to how libraries and other information centers act as social institutions with inherent power relations, economic and cultural concerns, ideology, and values, and to how these social relations are both constructed and enacted by-and imposed upon-individuals and groups. Discourse analysis offers a scholarly approach not only to critically examining the social justice assumptions presented by Rioux but also for analyzing the context of discourse: that is, the macro-, meso-, and microlevels, and the theoretical gaps between them . For discourse analysts, context is central, and for critical discourse analysts, macrolevel issues of power, dominance, and inequality between social groups is typically a concern. Conversely, Wetherell suggests that discursive psychology's study of "minds, selves and sense-making" changes "our understanding of individuals, their internal states, how people form their views of the world, their emotions, desires and innermost selves" . Discursive psychology often situates language use, discourse, texts, and communication to the microlevel wherein individuals are both producers and products of discourses in specific interactions. The critical discourse analysis approach and the discursive psychology approach to discourse analysis allow LIS researchers to investigate theoretical issues and research questions with a social justice orientation from an individual level, to a community level, and to a societal level. --- LIS Research and Discourse Analysis Discourse analysis is the study of language in use . It is the study of the meanings and actions people ascribe to language when it is used in a social context, and is described as "text and talk in action" . People do things with everyday language such as create factual descriptions, order, persuade, accuse, and otherwise accomplish social action . While these definitions and conceptualizations of discourse are broad and commonsensical, the fundamental common idea underlying them is that language does not neutrally reflect reality, nor is it "merely a channel through which information about underlying mental or psychological states and behaviour or facts about the world are communicated" . Through language, representations of reality are created and constructed, and people's use of language varies according to its function or purpose. Consequently, through language, social identities, social relations, and versions of the social world are generated, constructed, and constituted. While there are many discourse analytic approaches, a Foucauldian approach whereby discursive "practices systematically form the objects of which they speak" has been used in LIS to study the relationships between discourse and power. For example, Kimmo Tuominen Fairclough's critical discourse analysis views language as a social practice and focuses on the ways in which social, political, and economic domination are reproduced through talk and texts. He writes: "Critical approaches differ from non-critical approaches in not just describing discursive practices, but also showing how discourse is shaped by relations of power and ideologies, and the constructive effects discourse has upon social identities, social relations and systems of knowledge and belief, neither of which is normally apparent to discourse participants" . In LIS, Siobhan Stevenson applied Fairclough's textually oriented discourse analytic method to critical information policy studies in order to explore the rise and decline of state-funded Community Information Centres in Canada from the 1970s to the early 2000s. Heather Hill also applied Fairclough's critical discourse analysis approach in her doctoral work, examining the discourses arising from the movement of some municipalities in the United States from a traditional public library model-whereby the library is publicly funded, locally controlled, and managed by public employees-to a model whereby the public library is outsourced to private contractors. A critical discourse analytic approach has been taken in studies of education and information literacy and knowledge management . Another example of the application of critical discourse analysis comes from Daren Brabham in his study analyzing the myth of amateurism as it relates to crowdsourcing. Brabham found that the "amateur/hobbyist" label undermines the expertise and knowledge that self-selected experts contribute to crowdsourced projects, and that this has implications for labor and social relations. The myth of the amateur refocuses attention away from crowdsourcers as laborers deserving of workers' rights, ethical treatment, and pay. For scholars taking a critical approach, notions of power, ideology, and sociopolitical context are paramount and central to analysis. An additional approach to discourse analysis comes from social psychology. Wetherell, Taylor, & Yates outline three central topic areas of discourse analysis: The study of social interaction; The study of minds, self, and sense making; and The study of culture and social relations. For social psychologists the study of minds, self, and sense making focuses on the production of social actors and "is about the construction of psychological order in discourse: the construction of identity, the process of making sense, and the emergence of collective and individual mind" . In LIS, Natilene Bowker used discursive psychology to understand barriers experienced by people with disabilities in online environments. She found that the discursive resources and repertoires of "disabling differentials," "negative reactions," "gatekeeping," and "exclusion" placed barriers and influenced the participants' ability to engage online. Pam McKenzie ) has used discursive psychology in a program of research exploring the social information practices of pregnant women with twins and the information practices of midwives and their clients. McKenzie uses interpretive repertoires to understand how midwives and their clients as well as pregnant women with twins discursively position themselves to frame and shape information giving and receiving. Underlying many of these approaches to discourse analysis is the idea that language and discourses are constructed or coproduced. Constructionists see knowledge as dialogically constructed through discourse, and some LIS researchers take a constructionist view of information. Tuominen & Savolainen , for example, focus on information use as discursive action. The authors view information as socially constructed and analyze two conversational extracts to illustrate how information consists of two almost inseparably linked phases-discursive construction of information and the use of constructed information in action. In recent years, interest in a constructionist approach to LIS research has increased. A number of researchers either have used discourse analysis as a research methodology or explored its applicability to LIS , including a special issue of Library Quarterly on discursive approaches to information seeking in context . A discourse analytic approach has been used to explore a wide range of questions in LIS spanning all sectorsfrom asking foundational questions about the discursive formulations of the discipline, to discursive constructions of users, to exploring social information practices. The following section explores methodological considerations in discourse analysis. --- discourse analysis/oliphant 235 --- Methodological Issues in Discourse Analysis Underlying discourse analytic studies are certain epistemological and ontological claims. Most importantly, discourse analyses are not concerned with uncovering objective "truth." Foucault, for example, avoided epistemological questions about the correctness, veracity, or adequacy of knowledge claims and instead focused on how institutions such as psychiatry and criminology produce knowledge. In addition, a discursive psychology approach does not focus on the accuracy or veracity of claims but rather on how cases and descriptions are constructed to appear authoritative . Researchers using discourse analysis approaches do not typically aim or claim to capture a truth about reality; instead, they offer an interpretation or version that is inevitably situated and partial. Margaret Wetherell outlines the important reasons for this approach. First, the complexity of the social world does not lend itself to confident predictions. Second, and this ties in closely with social justice, no neutral single truth is possible because people have their own viewpoints, and to make truth claims based on one perspective is to deny diversity of viewpoints and experiences. The third point is about ontology-there are multiple realities and multiple truths, and the world is not merely a reflection of what exists. In terms of methodological implications, critical discourse analysts do not see themselves as politically neutral. Norman Fairclough argues that the primary objective of critical discourse analysis "is better understanding of how societies work and produce both beneficial and detrimental effects, and of how the detrimental effects can be mitigated if not eliminated" . Critical discourse analysts explicitly commit themselves to "an engagement in favor of dominated groups in society," and they explicitly conduct research with the aim of contributing to "specific social change in favour of the dominated groups . . . and may also attempt to influence and cooperate with crucial 'change agents' or 'dissidents ' of dominant groups" . For critical discourse analysts, methodological issues are paramount as their approach is centrally concerned with the interests of the social groups in which they engage and with methodology and methods that do not infringe upon the rights of the people they study. There are two primary methodological implications for critical discourse analysts taking a political position in their research. First, critical discourse analysts' sociopolitical stance has implications for choice of theory, methods, and data and for the priorities of their research. Second, critical discourse analysts recognize that taking a position alongside dominated groups in society requires research programs, theories, and methods that are complex and multidisciplinary. For critical discourse analysts, the political significance of the research can be evaluated by questioning the role of the research in maintaining or challenging power relations in society; that is, in relation to the ideological underpinnings of the work. Some of the primary methodological concerns for social constructionists and discourse analysts, particularly those using the discursive psychology approach, are the issues of reflexivity, relativism, and the role of action. Discursive studies themselves are reflexive; they are considered by researchers as discursive constructions representing one version of the world. Taken to its extreme, this means that a study can be considered to be merely a reflection of the researcher's worldview or reality and not an analysis of a research problem or question. And, in terms of relativism, how do we decide which version of reality is better or what claims to believe? It can be problematic to defend one viewpoint over another. Furthermore, how do we justify or defend privileging one discourse over another? Vivien Burr suggests that politics must inform decisions about which discursive objects to deconstruct and what to put in their place. Burr goes on to object to the relativity of discursive psychologists as "afraid of reifying alternative constructions, and remain 'observers and commentators,' leaving the action for others to take. Although they may talk of discourse operating ideologically and are certainly aware of the effects of talk in constituting individuals and groups in particular ways, discourse psychologists seem wary of following this through in terms of recommendations for social change" . The lack of a critical stance might suggest that discursive psychology does not offer much for those in LIS interested in social justice. However, an examination of goodness of fit with Rioux's five assumptions of social justice metatheory can assist in determining if this is indeed the case. --- Findings --- Discourse Analysis and Social Justice Metatheory This section returns to Rioux's metatheory of social justice for LIS and discusses how discourse analysis can inform his five assumptions of social justice. Vakkari argues that metatheories consist of very general ontological, epistemological, and conceptual presuppositions that guide actual theory construction; he defines metatheories as "orienting strategies" because "they do not signify substantive theories" . Here, discursive psychology and critical discourse analysis are examined for a goodness of fit for developing theory and exploring research problems in LIS related to social justice. Assumption 1: All human beings have an inherent worth and deserve information services that help address their information needs. According to Bruner , human beings are actively engaged in producing and managing discourses. They are capable of making decisions and actively participate in narrative self-constructions. Wetherell concurs: "At its most basic, the study of discourse and persons investigates how people tell stories about themselves and how they present themselves in talk. We can look at how people put together an account, the discursive practices and routines they use and the consequences of choosing one way of talking about oneself over another" . These narratives and conceptualizations have important implications for LIS, which recognizes that human beings are dynamic and draw on different discourses at different times, that their information needs are shifting, and that they also have agency. Conversely, a critical discourse analytical view of agency understands a "subject position" as determined by dominant discourses. The subject's actions are shaped and constrained by already existing social, historical, and/or biological forces and knowledge relations. Discourse analysis potentially allows LIS practitioners, educators, and researchers to better understand their communities and the people they serve. Furthermore, Budd & Raber claim that discourse analysis is used to examine communicative activities, and thus is an appropriate method for LIS because "the profession is one that is based on and sensitive to communication" . Discursive psychology can help LIS researchers and practitioners to better understand how users construct information needs . For LIS researchers and practitioners, the question of human agency and its relationship to discourse is essential to professional practice, research, education, and service provision and is intimately linked with Rioux's first assumption of social justice metatheory. Assumption 2: People perceive reality and information in different ways, often within cultural or life role contexts. A social constructionist viewpoint, which underlies many discourse analytic approaches, takes Rioux's second assumption as a given-there is no singular, objective version of reality. Rather than assess the veracity of accounts or descriptions, researchers move from studying language use as describing some objective "truth" about reality or the individual's internal state to analyzing how people use language to construct authoritative descriptions and accomplish specific actions . Potter argues that in almost every situation-from police reports, to courtroom proceedings, to mundane arguments between couples about whose turn it is to do the dishes-humans construct accounts that appeal to the facts, to describe what really happened, and to establish authority. These discursive constructions do not take place in a vacuum; they are reflective of cultural and life role contexts. Discursive psychology examines how descriptions become established as solid, real, and independent of the speaker. In LIS, for example, Talja argues that discourse analysis allows a researcher to understand what discourses participants access and how they use different discourses to present various positions that have meaning for them. Using different discourses or subject positions allows individuals the flexibility to take on different identities. "The starting point of discourse analysis is that meanings, values, and ethical principles are not individual creations, but entities that people create together in communication and social action. This view of language, mind, meaning and self-hood is dialogic, emphasizing that we are not 'self-contained' selves" . Understanding this dynamic dialogic is especially useful for understanding social information practices as communicative, social activities: how people construct themselves as competent information seekers, how people discursively use previously sought information, and how people perceive information and related concepts such as credibility, cognitive authority, and sense making . It also is an implied call for respecting diversity. In addition, a discursive approach to analyzing library services allows researchers to expand upon and elucidate concepts such as "information needs," "information use," or "information seeking" by making them be "seen as constructive action that can be studied as a real-world phenomenon rather than a theoretical abstraction" . Discourse analysis can uncover the different ways in which people perceive reality and information. Assumption 3: There are many different types of information and knowledge, and these are societal resources. Discourse analysts are concerned with knowledge production, truth claims, knowledge sharing, and social knowledge. To social constructionists, ideas about knowledge production have shifted from focusing on what is true to what knowledge is being used for. Inherent in this theorizing is the recognition that there are many different types of information and knowledge. Discursive psychology is not concerned about the veracity of truth claims but rather with how people use communicative resources in order to make such claims. While information and knowledge are societal resources, critical discourse analysis allows us to problematize the concepts of information, knowledge, and belief systems, as previously discussed . Critical discourse analysis studies both power in discourse and power over discourse, providing a means for LIS researchers to examine the underlying epistemological and ontological assumptions of information, knowledge, knowledge production, and knowledge sharing as well as belief systems and analyses of power and social relations. Critical discourse analysis also enables LIS practitioners and researchers to understand who has access to information and knowledge . Assumption 4: Theory and research are pursued with the ultimate goal of bringing positive change to service constituencies. Underlying a critical discourse analytical approach is a distinctly political goal of bringing positive change to constituencies or facilitating sites of resistance. Critical discourse analysts select research methods, and take a political position, that are in alignment with the rights and interests of the people whom they study. According to van Dijk , critical discourse analysts "prefer to focus on those properties of discourse that are most typically associated with the expression, confirmation, reproduction or challenge of the social power of the speaker or writer as members of dominant groups" . While the critical discourse analysis commitment to a political stance has been the source of great debate about bias, van Dijk also points out that not taking a political stance is itself a political choice. Discourse analysis as a research approach is inclusive and focuses on the social empowerment of individuals and groups, dealing with epistemological, ontological, and teleological issues. In terms of LIS, this means that discourse analysis research can help to identify power imbalances among and between individuals, groups, communities, and societies. Assumption 5: The provision of information services is an inherently powerful activity. Discourse analysts would accept this premise because libraries are social institutions, inherently connected to social and power relations. Libraries are subject to, and coproduce, powerful discourses about social institutions, people, culture, information, knowledge, belief systems, politics, economics, and the public good, and the relationships between and among them. Discourse analysis can make visible the power relations between library and information professionals and the people, communities, and societies they serve, but also between library workers and management, and other library stakeholders . In addition, discourse analysis research is a means by which professional guidelines and ethics, policy, and reflective practice can be scrutinized in terms of facilitating equity of access and promoting social justice. --- Discussion and Conclusion --- Discourse Analysis as a Research Approach The following are suggestions for social justice researchers wanting to use discourse analysis as a research approach. These suggestions align with Rioux's five assumptions of social justice metatheory. All human beings have an inherent worth and deserve information services that help address their information needs. Whether consciously or unconsciously, LIS researchers, educators, and practitioners take a position when undertaking a research project. LIS researchers take epistemological, ontological, and theoretical stances when they develop a methodology, i.e., deciding what research questions are worth exploring and which research designs are best suited to answering these questions. In terms of discourse analysis, some researchers may or may not make their position explicit, but often the object of analysis is to interrogate hegemonic and other dominant discourses. There is a long history in LIS of taking an explicit position in research, education, and practice , and the methodological approach to social justice research should be no different. Because discursive resources are based in social relations, tak-ing an explicit position in research or exploring dominant discourses in LIS acknowledges that all human beings have inherent worth and deserve information services that help address their information needs . People perceive reality and information in different ways, often within cultural or life role contexts. Given this assumption, a suggestion for researchers interested in social justice is that a critical discourse analysis can lay bare whose interests are being prioritized by social institutions such as libraries, whose interests are prioritized in all manner of library services, and whose interests are prioritized in terms of information policy . In essence, discourse analysis allows us to uncover whose "reality" and what information counts. The method also can assist in exploring discourses of resistance and help to reify alternative discourses. There are many different types of information and knowledge, and these are societal resources. Rioux's third assumption positions access to information and knowledge as a common good that must be promoted and maintained, and he suggests that libraries and library services are considered common goods. Discourse analysis can offer a number of research perspectives to explore who has access to information and knowledge and who does not. On a more microlevel of analysis, discursive psychology can assist in identifying how information sources are constructed and used by both individuals and collectives, which can ultimately help to make information services more relevant and meaningful to the communities they serve. Furthermore, a critical discourse analysis can be applied to macrolevel discourses about library governance, information policy, and an analysis of the changing role of the library in late capitalism. Theory and research are pursued with the ultimate goal of bringing positive change to service constituencies. For critical discourse analysts, a primary consideration in their research design is to employ methods that do not infringe upon participants. For many, bringing positive change to participants and their communities is a central goal of the research. Insights into dominant discourses can help LIS professionals facilitate the development of community-led librarianship as well as contribute to the coproduction of libraries. Furthermore, discourse analysis provides a means for LIS researchers to explore the discursive constructions of social justice itself. The provision of information services is an inherently powerful activity. As a service profession, guided by codes of ethics, the LIS community is foundationally interested in how power, social relations, and inequality are produced in society. Thus, LIS is not a value-neutral field or profession. Discourse analysts recognize that all discourses are potentially powerful and represent a possible version of the world. Furthermore, as Budd & Raber noted, both discourse analysts and members of the LIS community are concerned with and sensitive to communication. Information services are shaped, shared, and used through communicative processes , making all aspects of information services inherently interesting to discourse analysts. In addition, discourse analysts and LIS researchers recognize that knowledge organization, such as cataloging and classification systems, are also available for scrutiny . --- Conclusion Discourse analytic approaches are very much in alignment with the five assumptions of Rioux's social justice metatheory and share a social justice orientation. The central theoretical concept in critical discourse analysis is power: and since discourse is a form of action, power may be exercised by controlling discourse , which is of interest in different LIS contexts-practice, education, and research. Furthermore, critical discourse analysts share a political orientation found in the LIS community, taking a research position that explicitly involves seeking positive, empowering effects on dominated social groups. Critical discourse analysis employs a systematic methodology that examines the relationship between the language use and texts and its social conditions on the macro-, meso-, and microlevels related to Rioux's social justice metatheory. Discourse analysis is a heterogeneous approach that is useful for exploring almost any matter related to LIS as broadly conceived. Discourse analysis is inclusive, recognizes human worth and agency, explores the ontological and epistemological assumptions underpinning knowledge production, and can be a site of resistance. These are not neutral or value-free positions, which make discourse analysis a powerful approach for examining the critical intersections of LIS and social justice.
Scholars have employed a variety of research methodologies and methods to explore, probe, and uncover ways in which social justice is enacted, embodied, supported, or not supported by researchers, educators, and practitioners in library and information science and services (LIS). Discursive psychology as developed by social psychologist Jonathan Potter and critical discourse analysis as developed by Norman Fairclough are introduced as fruitful approaches to investigate the critical intersections of LIS and social justice. The theoretical development of social justice in LIS is discussed. Next, critical discourse analysis and discursive psychology are examined and then analyzed for goodness of fit with Kevin Rioux's (2010) five underlying assumptions of social justice metatheory: (1) All human beings have an inherent worth and deserve information services that help address those needs; (2) People perceive reality and information in different ways, often within cultural or life role contexts; (3) There are many different types of information and knowledge, and these are societal resources; (4) Theory and research are pursued with the ultimate goal of bringing positive change to service constituencies; (5) The provision of information services is an inherently powerful activity. Drawing on the findings of the goodness of fit of Rioux's metatheory and examples of discourse analytic studies in LIS, this article offers practical strategies for social justice researchers wanting to use critical discourse analysis or discursive psychology.
The research on which this article is based was funded by the German National Academic Foundation, the Wenner-Gren Foundation and the University of Oxford Moving beyond punitivism: Punishment, state failure and democracy at the margins The idea of a punitive public looms large in contemporary criminal justice. Politicians regularly appeal to the public's popular demands for harsher punishment when promising to crack down on law and order. From the UK's anti-social behaviour policies to the threestrikes and you're out laws in the US, elected representatives have referenced the suffering of ordinary citizens to justify the endorsement of ever more draconian policies. The politicisation of crime control -variously labelled the 'politics of penal populism' , the 'politics of law and order' and the 'politics of punishment' -has been subject to a great deal of commentary in academic scholarship . While the debate is far from settled, dominant narratives have tended to link punitive shifts in policy and law-making to broader crisis of legitimacy across Western democracies, including the UK and the US ). According to these views, at the turn of the 20 th century, politicians are responding to widespread social insecurities among the population by amplifying their authority in the area of crime and punishment. A central assumption underlying much of the discourse in both policy and scholarship is the claim that broader social insecurities generate popular demands for a stronger state. It comes perhaps as no surprise then that the figure of the Leviathan looms large. As Ramsay has pointed out, punitive shifts in criminal justice seem "to raise the themes of Thomas Hobbes' account of an absolutist sovereignty inaugurated by an insecure population" . Hobbes' account of the Leviathan is, of course, well known: people agree to leave the original state of nature -governed by insecurity and fear -to subject themselves to a centralised authority. This requires them to give up their freedom in return for which the state offers them protection of their person and property. Hobbes' view of state law is based on an assumption that societies only function in the presence of a centralized authority that maintains and enforces order. This is an assumption that has informed ways of thinking about the state in the West . Applied to the contemporary context of criminal justice, the argument is that widespread feelings of insecurity at the turn of the 21 st century have produced something akin to the state of nature, against which the state emerges, once more, as an authoritative source of order. In this article, I analyse how the narrative of the return of a contemporary Leviathan can be challenged if the perspective of the margins is taken into account. To this end, I ask, how does an ethnographic assessment of everyday uses of "law and order" amongst marginalized groups complicate the standard narrative of a punitive public? What happens if we start from the assumption that the state is not the generative source of order, at least not if judged from the perspective of law's subjects? And what are the broader implications of such a view for theorising the relationship between the public, on the one hand, and criminal justice, on the other? The case of a council estate in England provides a case in point. i Local residents often express demands for more policing and harsher punishments for local offenders. And yet, to interpret such calls for "law and order" as evidence of a popular desire for authority tout court would mean to miss an important point. Residents appropriate the state into their everyday lives, sometimes in ways that align with the law but more frequently for purposes that escape the official representatives of law and order. What is more, where the state fails to provide residents with the protection they want, residents can fall back on informal violence that gets condemned as unlawful action by the state. The ethnographic analysis suggests two broader points. First, that dominant commentary in criminal justice has adopted an understanding of order that is too narrowly focused on the state. To the extent that people rely upon the state in their daily lives, it is not a Leviathan that exercises control from the top-down. On the contrary, they see the state as a personal tool that is instrumentalised according to localized logics and the demands for action that these pose. Second, by shifting the focus away from the state's categories of order and disorder towards citizens' understandings of the state, my analysis also invites a broader reassessment of the relationship between the public and criminal justice. Scholars have tended to see the public as a toxic ingredient in criminal justice, as the former's punitive disposition is said to be dangerous to the even-handed workings of the latter . Yet, if my analysis is correct, then the opposite may be the case. Instead of isolating the public from criminal justice policy making, it is precisely by integrating the views of citizens -particularly those on the margins -that a different set of demands can be heard that moves beyond a focus on punishment . My analysis then extends the call for a closer attention to the political nature of questions of state authority and its relation to criminal justice . The data for this research is based on ethnographic fieldwork. The bulk of my fieldwork was concentrated on a large council estate of over 11,000 residents situated on the outskirts of a wealthy city in the south-east of England. Although parts of the estate have become privatelyowned and gentrified today, the residents that I spent most of my time with are in a low income bracket that entitles them to social housing or to subsidised rent in the private rental sector. They are men and women, mostly aged between their early 20s and late 30s, of both white British and Afro-Caribbean descent. Many did not finish high school education and drift in and out of employment, welfare dependence and sometimes the illegal economy of heroin and crack cocaine . They are in intimate contact with the criminal justice system, as victims or as perpetrators, and in many cases as both. I spent a period of 18 months between 2009 -2011 living with families in social housing and volunteering in a local community centre, with shorter follow up visits thereafter. I followed people in their daily activities, participated in their gossip and relationships, and over time, built a view of how they interact with the criminal justice system. I also interviewed local officials and sat in various meetings on local crime control issues. The quotes that follow are based on a few recorded interviews and many more reconstructed notes I took each day following informal conversations and participant observation. --- Criminal justice, the public and punitivism The public's presumed vulnerability has become a central reference point in contemporary criminal justice discourse. In the UK, this is perhaps best illustrated in the politics of law and order that became central to the New Labour government's electoral campaign in the lead-up to the 1997 elections. After 18 years out of government and four electoral defeats in a row, New Labour sought to mobilise popular support by actively re-positioning itself as a party that was going 'tough on crime and tough on the causes of crime'. According to New Labour, the most pressing issues confronting the country at that time were problems of incivilities and low level crime, referred to as problems of 'anti-social behaviour' which affected 'thousands of people whose lives are made a misery by the people next door, down the street or on the floor above or below' . It was furthermore asserted that the system, driven by an elitist culture, had long ignored the suffering of these citizens. To put this right, the balance in the criminal justice system would be restored, swinging away from the interests and rights of criminals and towards those of the law-abiding citizens. A view of rights was then endorsed that came to treat those who failed to live up to their responsibilities as new public enemies to be controlled and that endorsed the victim of crime as the new 'idealized citizen' in need of state protection . Upon coming into power in 1997, the New Labour government implemented a plethora of policies and legislation. This process has been described by Lacey , drawing upon Dubber , as the expansion of police power -a hierarchical and discretionary form of power aimed at managing a population -within and beyond the institution of the police. Under the banner of 'community' or 'neighbourhood' policing', the police were required to implement permanent 'neighbourhood policing teams' in designated areas and to improve high visibility and community-based policing strategies. Local authorities too came to absorb police power as they were required to set up their own units policing 'anti-social behaviour' and partnership agreements with other bodies, including housing associations, social services, youth services and sometimes even the churches, ii in tackling antisocial behaviour and low level crime. Finally, police power became manifest in the law itself. Most controversially, under the Crime and Disorder Act 1998, the government introduced the Anti-Social Behaviour Order which, as a civil-criminal hybrid, allows for the potential criminalization of behaviour deemed 'anti-social' by a member of the public. The ASBO is the primary example of how 'the vulnerabilities and needs of victims [have come to] define the appropriate conditions for government intervention' . Lacey has described the punitive turn as one of the 'most troubling empirical paradoxes of contemporary democratic criminal justice. For the fact is that, in many countries, criminal justice policy has been driven in an exclusionary direction with -perhaps even because ofpopular, and hence literally democratic, support ' . Commentators have tended to understand the punitive turn as evidence of a broader crisis . The contemporary moment in criminal justice is narrated in terms of crisis of legitimacy that governments are confronting across the Western world as they are increasingly unable to deal with social insecurities that have been unleashed in the latter half of the 20 th century. For Garland, these insecurities derive from heightened experiences of crime as a normal social fact . As citizens are dealing with the predicaments posed by the daily threats of crime, they experience ontological insecurity and become more fearful of strangers, thus predisposing them to punitive sentiments. Others, including Wacquant, have criticised Garland for placing too much emphasis on the cultural conditions of late modernity. He understands the punitive upsurge as part of a political project of the 'remaking of the state to foster economic deregulation and curb the consequences of the diffusion of social insecurity at the bottom of the scales of class, ethnicity and place' . For Wacquant, it is the deliberate turn to neo-liberal policies that has unleashed social disorder and released feelings of anxiety in the general public. Notwithstanding important differences in these scholarly accounts, they tend to coalesce around a central point: academics tend to depict a view of citizens who are in need of authoritative reassurance in the face of their own rampant vulnerability. This portrayal rings true of received distinctions between society and state that see the former as a locus of potential disorder against which the latter emerges as the repository of protection and order; hence, as Ramsay noted , the prominence of Hobbes' Leviathan in the current scholarship on the punitive turn. And yet, the idea of an inevitable turn to popular punitivism needs to be critically examined. For a start, institutional dynamics can and do mitigate the more punitive law making impulses that politicians may otherwise follow . What is more, the idea of a punitive public as a consequence of late 20 th century anxieties may be overly simplified . Hutton , for example, has noted that levels of punitiveness vary depending on what method of inquiry is used. Polls tend to invite the 'broad narrative of anxiety, that is a story about broad patterns of crime and punishment, about worsening problems and systematic failure to deal with these ' . By contrast, more discursive modes of inquiry reveal nuanced narratives among the public. In this article, I ask how the portrayal of a return of the Leviathan can be complicated if the perspective of those on the margins is brought into focus. My starting point for such an analysis is the security gap identified by Miller : the fact that marginalised citizens -that is to say people who live in poor and often minority-dominated neighbourhoods iii -tend to experience both high rates of victimization and insufficient and repressive police responses in their daily lives. This 'dual frustration' is evidenced in the case of the residents of a council estate in England. The residents have been primary recipients of the government's punitive turn, not only as presumed victims but also as potential and actual offenders. And yet, in their daily lives, residents appropriate local state officials; that is, they draw the police into quotidian disputes with neighbours, family and friends in ways that do not always align with the law. I argue that an ethnographic analysis of everyday uses of the police ultimately exposes the weaknesses of the state's own claim to authority and in doing so, calls for a reassessment of the relationship between democratic politics and criminal justice. In the following, I will develop the arguments in three steps. I will first introduce the security gap in more detail, second look at everyday uses of the police, and third turn to a closer assessment of personalised uses of law. --- The security gap on a council estate During my fieldwork, I became close to Linda and Tony, a couple in their early thirties who were living alongside Linda's two daughters in a small two-bedroom socially rented house on the edges of the estate. Tony was working as a bus driver and he was also the councillor for a local independent party that had gathered much support by campaigning about crime and public safety issues . One day, I walked across the estate with Alice, Linda's fourteen-year-old daughter, from their house to the bus stop. As we were walking along, Alice started telling me spontaneously about the places around us. At the corner of her street, a neighbour was stabbed last year. He had been followed by a group of young men from a different part of town, and been stabbed to death just in front of his house. Alice had been coming home from school when she had seen her street blocked off by police tape. A bit further along the main road, Alice pointed out that a van had gone on fire: her stepfather's exwife had heard the explosion and come out to watch. It turned out that it was arson attack. Then, again, over the other side was a part of the estate that she avoided going to altogether; her baby sister's father lived there, but the family was estranged from him. Two years ago, he had stolen her mother's dog and sold it to another resident on the estate. Alice and her family would still sometimes see the dog around the estate but Alice's mother feared that he might get violent, and so nobody did anything about it. 'Lots of stuff is happening here', she commented, 'I don't know why people still come out'. Alice's words spoke of a local topology of danger that she associated with the neighbourhood she had lived in almost her entire life. As I discovered over time, Alice's experience was not unusual. Young girls and boys growing up on the estate learned that the place they lived in was full of hidden dangers, or, as Alice put it, 'lots of stuff is happening here'. But Alice's words were not just a statement about victimization that she may fear at the hands of a neighbour, a group of men or her mother's ex-partner. It was also a reflection of the police's inability to keep residents safe from crime. Take the example of local drug dealers. Many residents felt that the police were failing to do anything about local drug dealers who were trading heroin and crack cocaine on street corners and from certain houses on the estate, and exposing nearby residents to the threat of street violence, and a politics of intimidation and fear. For example, when I asked Tony, Alice's stepfather, about the stabbing that had occurred on his street, he explained to me that the murdered man had been a local drug dealer who many residents on the street had repeatedly complained about to the authorities. They wanted to get him evicted from his house. The authorities' failure to intervene was evidence of the police's lack of interest in the neighbourhood and the people: 'They don't care about us here', was a sentence I frequently heard people say. People's complaints about the lack of policing may come as a surprise given the New Labour government's initiatives. Indeed, the police were a highly visible actor on the estate: in the early 2000s, a permanent police station was opened at the heart of the estate next to the main pub, the community centre and shops. The estate was also given its own neighbourhood policing team, with officers frequently patrolling the streets by foot, bike, car, helicopters or even on horses. CCTV cameras and mosquitos iv had been installed in prime spots. But most of the police's attention was focused on local youth . ASBOs were given to young men, both black and white, on account of their disorderly behaviour and they were often subject to curfews, injunction orders and random stop-andsearches. Early on, I became privy to what that meant: in my host family, a white English family with four children, Tyron, a fifteen-year-old, was regularly stopped and sometimes searched by the police. The police would tell him that he risked getting an injunction order for acting 'like he was in a gang' -that is to say, for walking around with a group of teenage friends in ways that appeared threatening to the authorities . Tyron knew that an injunction order would restrict his movements in the neighbourhood and his freedom to associate with others. A potential criminal record would also place his family's tenancy in jeopardy as it constituted a valid ground for eviction from a socially rented property. For many residents, then, the police's lack of care did not refer to an outright absence of the law and order on the estate. It was rather a reflection on the police's failure to deal with pressing problems of crime as residents experienced them in their daily lives: 'They criminalise kids for being kids and meanwhile, they do nothing about serious crime', Mandy once said to me in frustration. Mandy was a local resident in her thirties who found that the police's failure to intervene with problems of drug dealing on her street ended up having horrendous consequences on her life: a few months earlier, Mandy had called the police about a drug den on her street. Mandy was worried that her teenage son would get involved with drug dealing as he had started spending time outside the flat and was sometimes seen in the company of people she considered to be untrustworthy. Eventually, her fears came true: one night, Mandy heard a knock on her door, and when she opened, she was dragged into a car by two masked men. It turned out that her son had an outstanding debt with a drug dealer that he was unable to pay. Instead of her son, Mandy was driven to a cash machine and forced her to withdraw two hundred pounds. For Mandy, the police's failure to do anything about the drug dealing before things escalate was evidence of their hypocrisy. It stood in stark contrast to their heavy-handed approach to young people who she, and others, related to as their sons, their children's friends and neighbours. In short, we can see how the security gap was experienced on a council estate in England: residents like Mandy, Tyron and Alice were vulnerable both to being the victims of serious crime and to becoming the targets of police harassment and control. It is in this context, then, that we can understand residents' statements that they are very 'anti-police', that the 'police can't be trusted' and that the 'police are pigs'. Sometimes, people also portrayed the police as being on the same side as criminals, and complained that they were all part of the same problem . But negative attitudes towards the police did not preclude residents from engaging with the police on their own terms. On the contrary, as I got to know people more closely, I also became aware of the various ways in which residents appropriated local officers into quotidian dispute situations with their family members, neighbours and friends. To understand these often overlooked aspects of citizen-state interactions, I will now turn to a closer ethnographic assessment of some of these incidents. My point is that it is in these moments that more personalised uses of "law and order" come to the fore. --- Everyday uses of the police In her ethnographic study of everyday policing in the township of Soweto in South Africa, Julia Hornberger observes a process that she refers to as the 'welfarisation of the police'. Township residents, in particular women, routinely draw the police into marital disputes on a routine basis . Hornberger suggests that long-term dependence on the welfare state has paved the way for more intimate interactions between citizens and the state in other realms of social life, including everyday dispute situations. Her observation that people appropriate the state into their daily lives is relevant beyond the case of South Africa. In a predominantly Afro-American neighbourhood in Philadelphia, for example, Alice Goffman has recently shown that shifts towards more punitive policing styles, and the threat of confinement that this brings particularly for young black men, have also created a social fabric in which family members, girlfriends and neighbours deploy the police's power to suit their own ends. They use the threat of police arrest and of incarceration more generally to exercise pressure and social control over those who are close to them. Likewise, on council estates in England authors have noted that residents have always drawn the state into their everyday disputes with neighbours and ways of accessing welfare, both in the past and present . In a similar manner, on the council estate where I lived and worked, high levels of suspicion in, and mistrust for, the police force, did not stop residents from engaging law enforcement officials in the pursuit of personal goals. I was first made aware of this while listening to a conversation that took place between two women, Tracey and Kate. Tracey and Kate were local women in their thirties who raised their teenage sons as single mothers. Tracey was running a successful informal drop-in centre at the community centre that offered informal advice and assistance to residents on a range of matters. On the day in question, Kate recounted an episode from when Luke, her then fifteen-year-old son, turned her life into 'a living hell'. One evening, Luke had started swearing in front of his six-year old brother and being rude to his mother and even threatened to smash her TV. The two started arguing in the house but Kate had finally 'lost it' with him: 'If you wanna fight, you and me will do it in the street', she shouted at him and dragged him out of the house. In the meantime, Luke had phoned 999 , claiming domestic violence because 'he was scared I would beat him up'. When the police turned up, the two had indeed been fighting on the street. Kate told the police that she wanted to 'get him done for criminal damage'. The police took the boy to the police station but no charges were issued. 'After that, he went to live with his dad for two years, and now he's a lovely boy, we get on so well', Kate smiled. Kate was telling Tracey this story by way of giving her advice: Tracey herself was experiencing problems with her own teenage son at the time who had recently dropped out of a college course, started drinking and failed to contribute rent payments to his mother's house where he was staying. Kate was firm: 'Kick him out of the house', she instructed Tracey, 'and call the police if he comes back!' Indeed, a few weeks after the conversation between the two women had taken place, Tracey did ring the police when her son came home in the early hours of the morning and was banging on the front door: she reported him for 'vandalism'. Her son left before the police arrived but Tracey was satisfied that she had managed, as she said, to 'shit him up'. Over the following months, I became aware of the ways in which residents used law enforcement officials in various ways to handle quotidian dispute situations with their children, kin members, lovers and next-door neighbours. For example, a woman called the police to report her next-door neighbour for cannabis consumption. It later emerged that her next-door neighbour was actually her partner and she had reported him in the midst of an argument. In another situation, my neighbour's daughter, a sixteen-year-old girl, reported her mother's partner for staying at their house. The man in question had been banned from the house as part of a bail order. I learnt later that the girl had called the police after she had fallen out with her mother over the girl's suspected pregnancy . In interviews with police officers and other law enforcement officials, many complained that cases such as Tracey's were evidence of people treating them as if they were 'personal assistants' and that they were drawn into 'cat-and-mouse games' . For them, the situation was a distraction from what they considered to be their 'real' policing priorities and some officials even mentioned that they were a 'waste of police time'. The police's starting point was the assumption that residents' uses of the police constituted unreasonable or even illogical behaviour because it did not fit with their own expectations of appropriate uses of the authorities. But the situation looked different from the point of view of residents. Take the example of Tracey: she justified her decision to call the police on her teenage son by saying that she had wanted to 'shit him up', something that was also mirrored by Kate, who spoke of teaching her 'son a lesson'. Tracey was clear that she simply did not want to tolerate her son's disrespectful behaviour anymore. Further, she had been worried about what the neighbours might think of the late night banging on her front door and she did not want her son to implicate her in any more gossip. Tracey's explanations show that she did not call on the police to enforce any legalistic order. While residents like her may invoke an official language of 'vandalism', 'criminal damage' or 'breach of bail conditions', these were ways of framing personalised disputes as they sought to punish an unruly son, to exercise control over an ex-partner, or to take revenge on a parent whose behaviour one did not approve of. To sum up, the pattern that emerges from these incidents is one of localised disputes into which police officers are drawn in ways that do not easily correspond to the state's own categories of law and order but rather to more situational and localised logics of conflict. This, however, is a picture that is omitted in the meta-narratives provided by criminologists and sociologists of crime which have tended to start from the assumption that the state is a generative source of order. With this in mind, I want to turn now to the cases that were introduced at the beginning, namely situations of danger where residents do not consider the police to be an appropriate ally for protection. It is in these situations that people come to express punitive sentiments for harsher punishments of offenders that mirror the responses of informal -and often outright illegal -violence that they fall back on to protect themselves. --- State failure While residents appropriated the police in everyday dispute situations, we saw above that in many instances involving more serious experiences of victimisation, the police were believed to be widely inefficient. This meant that residents could be more reluctant to call on the police in situations involving acute or more serious situations of threat. The point is illustrated in the following case. Vera, a woman of Caribbean descent in her early forties with three children, had called the police after her pet cat had been taken and killed by a fighting dog. The owner of the dog was a local teenager called Dayne who was well known to the police for his 'anti-social behaviour', that is to say, his involvement in petty crime, although many residents also believed that he was a local drug dealer . Vera subsequently gave a witness statement in court that resulted in Dayne receiving ASBO that banned him from entering certain places of the estate, including where his family and friends lived. The day after the court hearing, residents stopped Vera on the streets: 'It took me hours to do my shopping', she recalled, 'because everyone congratulated me for speaking up'. However, the tables turned when Vera left for a short holiday. In her absence, her house and front yard were vandalised and someone had spray-painted 'grass' on the front door. Neighbours confirmed Vera's suspicion that the attack had come from Dayne's family. This time, Vera decided that she would not go back to the police. She explained: 'I don't wanna do nothing, I am scared. I don't want to call the police anymore'. In this instance, Vera decided to abandon police involvement half way through the process. As the dispute with the neighbour took on more threatening dimensions , her trust in the police's ability to act as an ally faded. When asked why she did not want to involve the police, Vera just looked at me and said: 'What for! They won't do anything and even if they do, it won't help me'. Vera's decision in this situation was to withdraw and to 'keep her head down', as she said, something that was also evident in the way residents like Alice or Mandy responded to predicaments of danger. But not everyone chose that course of action. In fact, as people let me into their lives, I frequently encountered that the opposite could be encouraged. For example, I saw Tracey giving advice to Pete, an older resident in his sixties who, for reasons he claimed were unknown to him, had become prey to vicious behaviour from his neighbours. They had intimidated him through a series of incidents, including making threatening remarks on the streets, uprooting the flowers that Pete had planted in his front yard, poisoning his hedge with bleach and most recently, they had left a mug outside his front door that had 'twat' written in large letters across it. Tracey, who felt sorry for Pete, advised that he call the police but quickly added that if they failed to help him, he should come back to her. Then, she added with a smile directed at Kate, who happened to be in the room: 'If the law won't finish them off, we will. We'll go round to their house and tell them that we're from the big families on the estate and that they can't fuck with us!' Tracey was joking when she said this, although she did take pride in the fact that she was from a well-known Afro-Caribbean family whose members were active in the church, community centre and in running the local pub. But underlying her joke was a reality where the use of informal networks was routinely mobilised in situations of danger . Similar to the moral economy of violence described by Karandinos et al in a poor Afro-American neighbourhood in Philadelphia, residents expected their friends and kin to act as allies against threats, expectations that could be instrumentalised in the pursuit of illegal force. For example, Ray was a local resident in his fifties who had fallen out with his next-door neighbour, a well-known local drug dealer. Ray decided not to call the police after his neighbour had threatened his wife and his kids on numerous occasions because he suspected that his neighbour worked as an 'informant' for the police. The word 'informants' was frequently used by residents to refer to people who were considered to be immune from police intervention, presumably because they had bought off the police in exchange for information. On this occasion, Ray had instead mobilised his mates to come around one evening and to threaten his neighbour with their presence, including threats with a baseball bat. 'I could've gone to prison for it', he told me, 'but at least I would've known that my family is safe'. For Ray, the risk of criminalisation was counter-balanced then against the protection that he needed to offer to his family to keep them safe. The point to emphasise is that it was precisely when deciding whether to call on official intervention that punitive sentiments could be expressed. The state's ability to inflict violence became a desirable quality as it was imagined as a threat that could be used as leverage against an enemy . For example, Vera and many other residents were of the opinion that ASBOs lacked 'teeth' -the threat of corporal punishment, boot camps and forced labour would all be more adequate forms of deterrence than a civil injunction order. Residents also frequently complained that they wanted more policing on their streets. Others heavily criticised the fact that members of the neighbourhood policing team, chiefly the Police Community Support Officers v , lacked full policing powers, calling them the 'plastic police'. Sometimes, demands for more punitive measures could take on the form of localised activism, as illustrated by the grassroots politics of a local political party that Tony Smith, Alice's step father introduced above, was a local councillor for. The party had managed to mobilise electoral support by going tough on local criminals where the authorities had failed to intervene, organising pickets outside individuals' houses, collecting CCTV evidence, patrolling the streets and threatening suspects . When commenting on these activities, Tony once said to me: 'Our world is a world where you do or get done. If we don't do it to them, they do it to us, we live in that kinda world. But the people in law they don't understand that you can't solve a problem by being all wishy-washy: middle class liberalism, it's the bane of our life'. --- Conclusion: democracy, punitivism and social order An ethnographic analysis of quotidian interactions between citizens and the state on an English council estate speaks of the ways in which state officials are drawn and sometimes expelled from daily dispute situations that define everyday life in the neighborhood. This, however, is a picture that is omitted in the dominant commentary in criminology and the sociology of crime where an emphasis on the top-down and autocratic nature of punitive policies foreshadows an understanding of the less obvious, more banal but nonetheless important interactions between officials and citizens on the margins. Thus, my analysis has shown that people frequently appropriate the state in their everyday disputes with neighbors, kin, lovers, and children in ways that do not easily align with the law. In these situations, law enforcement officials are mobilised as a personal tool for exercising social pressure, retaliation and instantaneous punishment. But there are other cases where reliance on law enforcement officials is discouraged; especially in situations of more serious threat, residents tend to withdraw from official intervention, sometimes in favour of mobilising their own informal networks for protection. It is precisely in these moments that punitive demands for a stronger state come to the fore as residents contrast their own reliance on what is often unlawful violence with the state's failure to protect them from personal threats. The picture presented here poses a puzzle. It does not fit with dominant narratives of the Leviathan that see the state as a generative source of order that citizens draw upon for the protection of their safety and that of property. From such a perspective, it seems illogical to say that citizens on the margins may involve the police in less serious, more quotidian dispute situations but mistrust the forces of law and order where threats to their safety may be more serious and acute. Ramsay has critiqued the image of the Leviathan in debates on the punitive turn. For him, the penal laws enacted in the name of protecting an insecure public cannot be indicative of state authority in the Hobbesian sense: this is because 'to justify...penal laws by reference to the security benefits of the vulnerable is an admission of defeat for Hobbes' sovereign ' . Or, to put it slightly differently, law makers and politicians admit their own lack of authority when they assume that the law's representative citizen is characterised by their vulnerability -something that Hobbes saw as being a central feature of the state of nature that the state was meant to eliminate in the first place. My analysis speaks to Ramsay's point by demonstrating that from the perspective of law's subjects too, the return of a Leviathan may be a myth. For the residents on the estate, the state is at best a personalised ally, and at worst as a public enemy, whose visions of order do not fit easily with the everyday reality of those on the margins. In light of these criticisms, perhaps it is time to adopt a different understanding of social order, one which does not start with the primacy of the state. Such is the perspective adopted by anthropologists who have questioned dominant narratives of the state as an entity that sits above society and dispenses order from the top-down . In places as diverse as Brazilian favelas , South Africa townships and Nigerian neighbourhoods , anthropologists have shown that people negotiate what is often a violent and discriminatory police force by appropriating it into their own efforts to maintain order and everyday social relations. But such processes are not limited to the global south. At the urban margins in the US and the UK , people call upon the police in ways that do not map easily onto the state's own categories of law and order. In so doing, they not only expose the state's failure to act as a harbinger of civilization and progress against an allegedly disorderly society. They also question the state's ability to command authority over its subjects. If my analysis is correct, then adopting a different view of social order has implications that go beyond the particularities of the case study presented. Here, I want to limit myself by pointing at the ways in which they invite a reassessment of the relationship between the public and criminal justice. There has been a tendency in recent commentary to see criminal justice and the public as a toxic mix. Precisely because the public's punitivism is said to be dangerous to an even-handed criminal justice system, interstitial layers of bureaucracy are said to be needed between the public and the criminal justice decision making process. As Zimring and Johnson have written, 'where there is a "professionalization of punishment" not only are punishment decisions removed from direct democratic control but the criteria for making such decisions are regarded as involving principles that require professional judgement ' . Yet, there are reasons to caution against calls for 'professionalization'. In a situation where masses of people already feel removed from what they experience as a distant and hostile system, excluding these same people as populist from further from public debate is likely to increase deep-seated disenchantments with their elected representatives . Even worse, such a move would validate further shifts to technocratic and managerial modes of decision-making that, according to some scholars at least, have hollowed out democracy of its substantial meaning and resulted in a 'postdemocratic' state . A more fruitful starting point may be to acknowledge that questions of state authority and its relationship to criminal justice are always bound to be political and hence far from inevitable or simply given . Such is the suggestion made by Miller who argues that paying attention to the views of at risk populations can help to 'reconfigure our understanding of the democracy and crime punishment nexus because it redirects our attention to the political demands of those most at risk of violence as well as a whole host of other social inequities' . My analysis pushes the point. On a council estate in England, the residents are not uniformly punitive. Rather, their demands for harsher punishment of local offenders reflect a reality of high victimization by both crime and criminal justice. What is more, everyday forms of reliance on law enforcement officials speak of the ways in which residents strive for a more accountable state, that is to say, a state that is amenable to the lived realities of those on the margins. Instead of seeing punitivism as an aberration of late 20 th century, we may then begin to ask in what kinds of situations people come to demand more law and order and how these situations are mediated by structural factors and inequalities. Likewise, rather than trying to keep punitivism in check, a more fruitful starting point may be to look for alternative demands that remain unacknowledged by focusing on punishment alone. And --- Author biography Insa Koch is a lecturer in law and anthropology at the London School of Economics. i The names of the estate and of residents have been changed to protect anonymity. ii Partnership agreements with the church include the so-called "holy alliance" between local authorities, the police and churches. Church members called "street pastors" are dressed in uniforms and patrol the streets to assist the police in detecting anti-social behaviour and crime. iii Debates on minority and race relations have been more central to the US than the UK where poor neighbourhoods tend to be racially mixed and relations between white British residents and minority ethnic and racial groups often run deep . iv Mosquitos are devices that let out a high pitch sound that only young people are supposed to hear. They are used in public areas to stop young people from congregating. v Police Community Support Officers are uniformed civilian members of police support staff. They are non-warranted but are provided with limited police powers.
Recent commentary on the punitive turn has focused on the repressive nature of criminal justice policy. Yet, on a marginalised council estate (social housing project) in England, residents appropriate the state in ways that do not always align with the law. What is more, where the state fails to provide residents with the protection they need, residents mobilise informal violence that is condemned by the state. An ethnographic analysis of personalised uses of criminal justice questions the state-centric assumptions of order that have informed recent narratives of the punitive turn. It also calls for a reassessment of the relationship between democratic politics and criminal justice by drawing attention to popular demands that are not captured by a focus on punishment alone.
BACKGROUND The discovery that antiretrovirals can prevent onward sexual transmission of HIV has significant implications for HIV prevention. Growing evidence has demonstrated that an HIV-positive person taking ARVs with undetectable viraemia is highly unlikely to transmit HIV to an unprotected sexual partner. [1][2][3] UK HIV-expert organisations have endorsed this position, stating that the absence of sexually transmitted infections and regular adherence to ARVs, in addition to undetectable viraemia, is an effective method of preventing HIV transmission in vaginal sex and significantly reduces risk in anal sex. 4 Evidence also suggests treatment as prevention works at community level through reducing population-level viraemia. [5][6][7] WHO guidelines advise treatment initiation at a CD4 count of 500 8 while a number of cities and countries have introduced policies to encourage the immediate treatment of people diagnosed with HIV to reduce community viral load and new infections. 9 10 However, evidence from the UK suggests a limited impact on community-level effectiveness 11 and current UK treatment guidelines advise early treatment decisions be made on an individual basis. 12 The effectiveness of TasP at a population level relies upon maximising the number of HIV-positive people at each level of the treatment cascade: diagnosed with HIV, currently in care, taking ARVs and suppressed viraemia. 13 Although the population-level treatment cascade has received much attention, there has been limited consideration at an individual level as to whether potential recipients of TasP will find this prevention strategy acceptable. 14 Our review found only three such studies. These studies identified limited awareness of TasP, as well as scepticism about its effectiveness to prevent HIV transmission. There is a clear need to understand the factors that might prevent and/or facilitate the effective use of TasP. Drawing on extensive international evidence of HIV prevention successes and failures, Kippax and Stephenson have argued that a social public health approach is needed to better facilitate the use of ARVs for HIV prevention. 15 That is, there is a need to understand the social context in which TasP-related HIV prevention is implemented. As we have argued elsewhere, this means that understanding the acceptability of TasP requires moving beyond expressions of willingness or adherence to medication and identifying the broader social, cultural and structural factors that will affect potential uptake and sustained effectiveness of TasP. 14 This paper reports on findings from the first qualitative study in the UK exploring the acceptability of TasP among communities most affected by HIV. We identify a range of social factors and constraints that could affect the uptake and use of TasP on an individual level. --- METHODS We employed mixed qualitative methods to explore the acceptability of TasP with the two communities Open Access Scan to access more free content most affected by HIV in Scotland: gay, bisexual and/or men who have sex with men and men and women from migrant African communities. While Scotland is a low HIV-prevalence setting, these two communities represent over half of all new HIV diagnoses. 16 We included HIV-positive and HIV-negative and/or untested participants in the study given the relational nature of sex and HIV prevention. First, we conducted seven exploratory focus group discussions with convenience samples of MSM and mixedgender African participants aged 18-75 years recruited through community and/or support groups with the assistance of sexual health organisations in Glasgow, Edinburgh, Motherwell and Selkirk between August and November 2012. Of these, three FGDs were conducted with HIV-positive MSM and one FGD with HIV-positive Africans . Participants were first asked about their understandings and management of sexual health risks, focusing on the role of sexual health technologies within these strategies. To facilitate discussion, participants were presented with a range of items, such as condoms, sachets of lubricant, a home pregnancy test, an emptied bottle of Truvada , a mock-up bottle of antibiotics, a list of ARVs available in the European Union, and images of an Oraquick ® In-Home HIV test and a rapid, fingerprick HIV test. In the second part, pre-exposure prophylaxis and TasP were explained to participants with the help of visual aids . Participants were asked to discuss PrEP and TasP in relation to their own sexual health, including if and how they might be used, and to identify any barriers or facilitators to their use. Participants received £15 vouchers and travel costs at the end of FGD. We then conducted 34 in-depth interviews between March and September 2013 to explore issues emerging from FGD findings and examine personal risk management practices in further depth. The purposive sample comprised MSM and Africans aged 19-60 years from Glasgow, Lothian, Lanarkshire and Grampian, half of whom had been diagnosed with HIV at the time of the interview . Recruitment was conducted via targeted flyers, posters and emails distributed through clinical, community and culturally specific non-sexual health avenues. Participants received £20 vouchers. Semistructured interviews explored PrEP and TasP acceptability within the context of existing risk management strategies. The first part of the interview focused on personal experiences of and perspectives on HIV, sexual health risk management practices and use of sexual health technologies. Participants were presented with a list of sexual health technologies that included all of the objects used in FGDs. The second part of the interview focused on the acceptability of PrEP and TasP, exploring awareness, potential use, concerns and combination with existing risk management strategies. The focus group and interview topic guides are available in the online supplementary material. All FGDs and IDIs were digitally recorded and transcribed verbatim. Transcripts were anonymised and coded in NVivo 10. Data were analysed thematically, drawing on predetermined and emergent themes. 17 18 Rigour throughout the analysis was achieved through an iterative process of discussion with coauthors and revision of findings. [17][18][19][20][21] In this paper, we present findings from the TasP-related discussions. Illustrative extracts referred to by number in the following section are provided in box 1. --- RESULTS A range of factors that could affect the acceptability and uptake of TasP were identified and are described below. --- Awareness and HIV literacy Lack of awareness and inequalities in HIV literacy were identified as barriers to TasP. Participants expressed very limited awareness of TasP as a 'branded' HIV prevention strategy. There appeared to be limited awareness of the link between suppressed viral loads and reduced levels of infectiousness. Awareness was affected by serostatus, with predominantly HIV-positive participants reporting knowledge of the link between an undetectable viral load and reduced HIV transmission. However, almost all of the participants, regardless of serostatus, appeared to struggle with the idea that someone living with HIV might not be infectious. For many, this doubt was grounded in the simple association of infectiousness with an HIV diagnosis, regardless of treatment status or viral load. Inequalities in HIV literacy skills among participants also affected TasP acceptability. For those, mostly HIV-negative participants unfamiliar with clinical terminology such as undetectable viral loads, TasP could be misunderstood and exacerbate stigma . However, some of the HIV-positive participants described scepticism of TasP on the basis of their in-depth HIV knowledge , highlighting how awareness and knowledge alone may not translate straightforwardly as acceptability. --- Social constraints and other risks A number of social constraints were identified as barriers to TasP. HIV-positive participants, especially African men and women and MSM who had been living with HIV for a number of years, were critical of TasP as they expressed concerns about the burden of treatment, such as the daily work of taking ARVs . HIV-positive participants also described other risks that might emerge as a result of TasP and/or that TasP would not address, such as the criminalisation of HIV transmission, the risk of STIs and the potential for developing resistance to treatment . --- Perceptions of risk and TasP candidacy Perception of risk was identified as an important psychological barrier to TasP candidacy. Our analysis showed clear differences in the ways that HIV-positive and HIV-negative participants considered risk in relation to TasP. HIV-negative participants commonly expressed an unwillingness to consider TasP as a prevention strategy in a serodiscordant sexual relationship due to a perception of high risk of HIV transmission . Responses of many of these participants were generally framed by fear of any sexual contact with a known HIV-positive sexual partner. For the remaining, largely HIV-positive participants, TasP was not embraced as a primary prevention strategy because of a low perception of risk of HIV transmission and a perceived lack of need for additional protection. Most described practising multiple methods of HIV prevention, including reliance on condoms, serosorting, avoiding 'high-risk' sexual acts or abstaining entirely from sex. These participants not only described their existing risk reduction strategies as effective, but also the extent to which they worked to maintain these efforts. As a result, most perceived risk of onward HIV transmission as minimal and were not immediately convinced of the need for additional protection. Moreover, all HIV-positive participants not taking ARVs expressed a desire to delay treatment initiation. One participant rejected TasP when it was offered to him in clinic because he was confident that risk of HIV transmission was minimal with his serodiscordant partners because he was already using condoms . He further explained how his rejection of TasP was compounded by the perceived burden of treatment . It appeared that for these HIV-positive participants, the added protection that TasP offered was neither necessary nor a sufficient tradeoff for their potential treatment burden. The latter could be avoided by delaying treatment initiation until deemed clinically necessary. --- Perceptions of treatment Many HIV-negative participants described the perceived inevitability of taking ARVs and subsequent preventative benefits of treatment as a positive step for HIV prevention. While the broader benefits of good health and protecting a sexual partner contributed to this perspective, some HIV-negative participants identified social stigma as a potential barrier to TasP . This FGD extract illustrates the social tensions between the imperative for people living with HIV to prevent onward transmission at any cost and the perceived experiences of HIV-related stigma and treatment burden. Moreover, many HIV-positive participants, especially African women, described a perception of constrained choice in relation to treatment initiation and the broader public health imperative of HIV prevention . --- Relationships and shared decision making The relational context of sex was identified as a potential facilitator to TasP among HIV-positive participants. Reliance on TasP without condoms was something that many HIV-positive participants said they would only consider in long-term serodiscordant relationships and with the 'right' partner . While participants appeared cautious about the sexual partners with whom they would rely only on TasP, many were also optimistic about the possibilities TasP enabled, especially in terms of improved intimacy in long-term relationships. For example, one HIV-positive participant described how a previous serodiscordant relationship might have worked out differently if he had known about TasP . The decision to rely only on TasP within long-term sexual relationships was not a decision HIV-positive participants felt they could make alone, and many described how it would be a shared decision with a serodiscordant partner . However, inequalities within relationships, especially in relation to gender and serostatus, were described by participants as complicating this shared decision making . This was not a topic participants took lightly, and some described the difficulties in knowing if, how and when to raise the issue with a partner who may have limited HIV literacy . Although shared decision making in sexual relationships was identified as a potential facilitator to TasP, many HIV-positive participants described feeling in a vulnerable position within serodiscordant sexual relationships. This meant potentially deferring TasP-related decisions to their sexual partners, if they were able to raise it at all. --- DISCUSSION This is the first study of TasP acceptability among communities affected by HIV in the UK. We found limited awareness of TasP, as noted elsewhere. 22 23 We identified a number of barriers and facilitators to uptake, and our results suggest that potential use and management of TasP may not be straightforward. It could be contingent on reducing inequalities in HIV literacy, minimising the perceived burden of treatment and other potential risks, and addressing the dynamics of existing and socially acceptable risk management strategies, especially in relation to long-term serodiscordant relationships. Our findings in relation to TasP awareness and limited engagement with the contemporary science of HIV risk demonstrate that inequalities in HIV literacy could be a major barrier to TasP. While some HIV-positive participants demonstrated knowledge of clinical indicators of HIV risk, most participants expressed little understanding of and trust in the effect of non-detectable viraemia on risk of HIV transmission. This had implications not only for TasP but for identification of risk in relation to HIV more generally. Our findings echo Holt et al, 24 who reported that Australian HIV-negative MSM were more sceptical than HIV-positive MSM of reduced risk of transmission with undetectable viral loads. Our findings suggest the need to address diverse levels of HIV literacy, especially in relation to the effective identification of and response to HIV risk based on contemporary clinical understandings of HIV, to ensure the appropriate understanding and uptake of TasP. Our study identified a number of constraints to the effective and ethical use of TasP, especially in relation to additional risks for people living with HIV, such as risk of criminalisation of transmission or increased risk of STIs. While Kalichman et al reported an association between the belief that undetectable viral loads reduced HIV infectiousness and contracting a new STI in a US study with HIV-positive individuals, 25 participants in our research were anxious about such risks. Moreover, participants expressed concerns about the burden of treatment that TasP might augment, for instance, through the additional work of adherence, 26 poor mental health and the perceived constrained treatment choices resulting from the public health imperative to prevent HIV transmission. These findings demonstrate how TasP could increase the burden of prevention experienced by people diagnosed with HIV through the increased social, psychological and physical work in managing risk with ARVs. Although current HIV treatment guidelines in the UK state that the decision to start treatment must not be due to pressure from others, 12 supporting people diagnosed with HIV in relation to TasP needs to consider the potential impact of these social burdens. Interestingly, HIV-positive participants would only consider TasP and non-condom use with long-term serodiscordant partners. We suggest that potential non-condom use within this specific context should not be viewed as risk compensation, 28 but as a carefully thought out risk reduction strategy within a trusted, monogamous relationship. In this way, relationships and shared decision making were identified as potential facilitators for TasP. Although participants did not always feel in a position to negotiate non-condom use, TasP did enable some to imagine improved longer-term sexual relationships. Consequently, TasP was seen in some cases as a prevention method with the potential for improved sexual health and well-being. These findings highlight the need to support shared decision making within relationships, while addressing potential inequalities, to achieve shared risk reduction through TasP. --- Limitations With a small sample of MSM and migrant African participants from a low HIV prevalence setting, some of whom were engaged in sexual health or community services, our findings are not generalisable to a wider population but are transferable to similar populations in similar social contexts. For many in this study, TasP was a hypothetical concept and findings will be limited as a result of few direct experiences with TasP. However, our use of focus groups minimises this potential limitation as it addresses the social context and anticipated uptake of products. 27 --- Relationships and shared decision making A. Initiating TasP as a prevention strategy with the right partner I don't think I would start using it just for, like, anybody, I think, but if it was sort of a, someone, a very long term thing and, you know, we'd discussed everything. this guy I'm seeing now, you know, I'd like to have bareback sex wi' him. But thinking how do I bring that issue up with him? And how would he…what would he think of me then? Would he be thinking 'are you fucking…you're willing to put my life at risk,' you know? Because he wouldn't know anything about…I feel, I sometimes feel like saying to him 'I've printed all this off for you, go and read it.' But that's forcing somebody into something that if…if he felt like that…I think he knows that I would like to do that because of certain signs or something I've given him, but we've never discussed it. --- Box 1 Findings --- Awareness and HIV literacy A. Limited awareness he said that he had a low viral load and it was undetectable and…I remember googling it 'cause I was like 'what the hell does he mean?' and, of course, because he said it was undetectable, I was thinking 'so that means that I could get it but then mine isn't detectable?' So…I was thinking 'I don't want…I don't want to put myself at risk and then I get an undetectable one and then they can't tell me I've got HIV because it's undetectable. R2: Some people know, they might get fed up of taking the drugs and hiding as well as you said there, they hide yeah? They can't go to anywhere they like without packing their drugs, they would be carrying their bag as if is baby, they can't leave their bag no, at some point and they don't see any changes. They might stop. Some people might get depressed and stop… R1: …if people have a motivation, a reason for continuing to take the ARVs whether it's for good health, whether it's for keeping their partner safe. I think they are more likely to keep taking the ARVs… B. Constrained choices don't really have a choice because when we're pregnant we have to be on medication whether you like it or not. --- CONCLUSION The acceptability of TasP at an individual level will affect how effective it is as a population-level HIV prevention intervention. Our findings demonstrate that there is a need to improve HIV literacy and increase knowledge about TasP among those most affected by HIV so that informed and equitable treatment and risk reduction choices can be made. The recent Community Consensus Statement on TasP called for the safeguarding of the health and well-being of people living with HIV within the context of TasP, 28 and our study highlights how effective implementation and support of TasP also needs to pay attention to the social and sexual context within which TasP will be used. Without this, we would suggest it has little chance of affecting on HIV prevention at the community level. --- Key messages ▸ There is a clear need to understand the factors that might prevent and/or facilitate the effective use of treatment as prevention at an individual level. ▸ Inequalities in HIV literacy, social constraints such as treatment burden and perceptions of risk were identified as potential barriers to TasP. ▸ Relationships and shared decision making were identified as potential facilitators to the effective use of TasP. ▸ TasP will be contingent on addressing inequalities in HIV literacy and other social constraints, and engaging with the dynamics of existing and socially acceptable risk management strategies. Handling editor Jackie A Cassell
Objectives There is a clear need to understand the factors that might prevent and/or facilitate the effective use of HIV treatment as prevention (TasP) at an individual level. This paper reports on findings from the first qualitative study in the UK exploring the acceptability of TasP among gay, bisexual and/or men who have sex with men (MSM) and migrant African communities in Scotland. Methods We conducted seven exploratory focus group discussions (FGDs) with convenience samples of MSM (five FGDs, n=22) and mixed-gender African (two FGDs, n=11) participants. Of these, three FGDs were conducted with HIV-positive MSM (n=14) and one FGD with HIV-positive Africans (n=8). We then conducted 34 in-depth interviews (IDIs) with a purposive sample of MSM (n=20) and Africans (n=14, women=10). Half were HIV-positive (MSM, n=10; African, n=7). FGD and IDI data were analysed thematically drawing on predetermined and emergent themes. Results We found that inequalities in HIV literacy could be a barrier to TasP, as could social constraints, such as criminalisation of transmission, increased risk of sexually transmitted infection and increased burden of treatment. We also identified psychological barriers such as perceptions of risk. However, relationships and shared decision making were identified as potential facilitators for TasP. Conclusions Our results suggest that potential use and management of TasP may not be straightforward. It could be contingent on reducing inequalities in HIV literacy, minimising the perceived burden of treatment and other potential risks, and addressing the dynamics of existing and socially acceptable risk management strategies, especially in relation to long-term serodiscordant relationships.
Introduction The crescent extent, intensity, and diversity of human uses of the ocean rely on accelerating spatial access to resources . Humankind is urged to rapidly change how we govern the ocean across interdependent local and global scales . Research on and practise of ecosystem-based management approaches has been advanced to address predominantly sectoral and fragmented ocean governance systems . To enable shifts towards EBM regimes and to promote governance transformations at multiple levels, it is essential to embrace the complexity of coastal and marine social-ecological dynamics . EBM can possibly be built-in across an array of integrated area-based policy options, e.g. marine protected areas and marine spatial planning , among other instruments to manage oceanscapes . While several nations are in the process of implementing integrated area-based solutions, most countries are still struggling with cumulative impacts generated by the interaction of antagonistic interests . The struggles of ocean actors in pursuing policy innovations to manage ocean resources are exemplified by the persistent challenges for implementing integrated approaches and by the disparities between how those approaches are conceptualised and practised . The complexity social innovators face partly derives from the wickedness of incumbent regimes, their path dependencies and policy layering . The outcomes of ocean management attempts are typically unclear and often driven by organisations with competing and/or overlapping attributions and legal competencies over marine areas . Moreover, research has pointed out that many countries adopt depoliticized area-based ocean planning strategies in which engagement and meaningful debates with stakeholders are minimised, resistance to transforming the status quo remains, and contestation is replaced by elite and technocratic-managerial governance . These ocean governability challenges require novel marine social science research approaches that are better capable of diagnosing ocean governance regimes and identifying ways to improve their functioning. Transdisciplinary research can function as a wildcard in the establishment of marine governance 'transition arenas' -an idea resonating with proponents of somewhat related concepts and applications in the ocean governance realm such as 'policy-experimentation' , the formation of 'learning-networks' , 'knowledge-networks' , and a range of other networked-knowledge to action approach aiming to facilitate interaction, knowledgeexchange and learning by and between social innovators . However, while frameworks and tools have been developed to assess and support change in ocean governance, Kelly et al. reviewed the most cited academic papers in the field to find out that much of the research is still naively impotent to deal with fragmentation in ocean governance systems. These authors call for a more realistic understanding of the context in which transformative change in ocean governance systems takes place. Promoting actionable knowledge, informing social innovation, and shedding light on the complex structures of ocean governance arenas is crucial to revealing transformative pathways connected to decision-making in ocean affairs. Social network analysis is a helpful analytical tool with the potential to provide recommendations on how to improve policy responses to explicit contextual complexities. By creating and analysing maps of social connections between actors , SNA examines the social structures and dynamics of a variety of governance systems. Its application encompasses conceptual studies and empirical analyses of specific contexts from specific sectors , area-based solutions in various coastal and marine ecosystems , and knowledge-exchange interfaces in marine science-policy arenas . Nevertheless, SNA-informed sustainability research agendas face methodological challenges to optimise social learning outcomes. For instance, we may cite the mismatch between the timing of data-intensive collection programs, analysis of results and timely social learning feedback to support social innovators navigating respective interactional structures. Therefore, the importance of actively involving social actors in research to achieve social learning goals and to create actionable knowledge calls for the application of transdisciplinary research. Participatory SNA approaches offer a promising methodology in that regard. Net-mapping enables social actors to learn through systematically exploring, visualising, and reflecting on their knowledge and perceptions of the formal and informal relationships, and power structures at particular ocean governance problem-domains . While the application of net-mapping may boost participants' learning, it also offers an opportunity for a quali-quantitative analysis of their perceptions on governance strategies and potential pathways. It is essentially these perceptions that hinge upon actors to guide their behaviour towards nature and natural resource management and conservation . The study of perceptions in environmental governance and management is critically emerging to address how human and institutional actors interact and affect each other given their respective interests and influence within sociopolitical arenas . However, most SNA and netmapping research only takes and empirically analyses static snapshots of specific realities. The low number of examples of studies on governance network dynamics still limits our understanding of how SNA research insights may optimally feedback the evolution of institutional-building and entrepreneurship processes. Network studies that consider the perception of actual governance structure and their envisioned potential future are still scarce. To support ocean actors in the imagination of radically alternative pathways, sustainability researchers can engage with complexity through phronetic approaches such as scenario-building and net-mapping that stimulates co-production of knowledge and reflexive learning about the past, present, and future of social networks in environmental governance . --- Navigating Brazil's ocean governance regime transformations The Brazilian national ocean governance system is currently dominated by the operation of an Interministerial Commission of Marine Resources composed of fifteen highlevel authorities of the federal government and the navy and chaired by the Brazilian Navy's Command. CIRM was created in 1974 as a national response to discussions about the United Nations Convention on the Law of the Sea and of the Stockholm Convention , as well as the global impulse to address environmental issues. It was born during a military regime when the country was adapting to the oil crisis. The crisis, seriously affecting the economy, became the setting to a new phase of national oil exploration and economic autonomy . Brazil turned out to be a globally potent oil producer, and with massive oil reserves located offshore, CIRM consolidated its importance for the realisation of Brazil's economic aspirations. Under the strong leadership of the Navy, CIRM became a resonating platform for the country's sovereignty and entrepreneurial spirit towards the exploration of Brazilian oceanic treasures . CIRM's involvement in ocean issues was particularly important in relation to geopolitical claims over the Brazilian Exclusive Economic Zone and Extended Continental Shelf, which demanded a series of oceanographic studies coordinated under CIRM. In the past decades, Brazilian governments have developed several laws, policies and programs for integrated coastal management, protected areas, environmental licencing, and other territorial or sectoral management policies . With the enactment of the National Constitution of 1988, ocean policies were embedded in democratic principles. The Coastal Management National Plan, also created in 1988 and regulated in 2004, led to the establishment of the Coastal Management Integration Group within CIRM. GI-GERCO is the most participatory national ocean governance arena in Brazil, as it is the only one encompassing a seat for civil society and an academia representative. Brazilian governments and parliaments have developed further policy instruments to advance participation, integration, and sustainable approaches to ocean governance . In 2013, a new overarching marine bill was proposed in the National Congress that advances the ecosystem-based management approach and cross-sectoral integration through marine spatial planning . The passage of this bill, however, has challenged progressive policymakers ever since. While policies on how to govern the ocean have advanced into an extensive legal framework, in several circumstances these policies lack appropriate levels of implementation to steer more sustainable pathways-which is especially poignant against the backdrop of attempts to accelerate coastal and ocean-based economic development . A Brazilian MSP arena emerged in 2011, and the pre-planning phase developed significantly in subsequent years . In 2013, a special working group was officially designated within the CIRM system to become the governmental think-tank for the country's MSP process, namely the GT-UCAM . After the implementation of the special task force, however, the innovation process led by GT-UCAM entered a phase of quiescence, even though the number and diversity of non-state agents in the MSP policy arena has increased since then . Thus far, 8 years have passed and the Brazilian MSP continues in pre-planning mode, both at the legislative process aimed at crafting a new Marine Bill that includes MSP among other policy instruments, and at the heart of federal government efforts to take this agenda forward . In the past decade, Brazil has seen a surge in the number of aquatic transport infrastructure projects undergoing fragmented licencing processes . The fragmentation and disconnection of major infrastructure licencing and urban development to sectoral planning add to a lack of fully developed MSP at the national level. Therefore, despite having an established legal framework for integrated coastal and nearshore marine planning, the broader Brazilian ocean governance system presents overall low-performance levels and is largely operating in a politically unstable, fragmented, and sectoral policy-based regime across the jurisdictional scale . This is arguably the case from the level of integrated city planning, from states up to federal ordinances of the country's immense Exclusive Economic Zone and Extended Continental Shelf, with a total area larger of 5.7 million km2 . 1 For instance, in 2018, less than half of the seventeen Brazilian coastal states had developed integrated coastal-marine management plans to handle the uses and resources of over three hundred cities distributed along the coast . This wicked context seemingly favours the relational atmosphere for political speculation, lobbying and bargaining in favour of traditionally powerful private actors or governmental national sovereignty interests, hence fostering unjust ocean policy-making arenas in Brazil . Previous inter-and transdisciplinary research has assessed the conditions outlined above, attempting to understand Brazil's ocean governing capacities in further detail and identify contexts of opportunity for promoting transformative change. Gerhardinger et al. argued these flaws in the ocean governance system should be confronted with the evolution of polycentric, hierarchic and coevolutionary governance contexts . Until 2018, Brazil's ocean governance system was still opening for transformation, inclined to develop from fragmented and sectoral approaches towards an integrated and ecosystem-based regime. Although the dominance of old institutions and premises were still evident, Gerhardinger et al. reported that signs that the system could be releasing resources as small pockets of and support to experiment with ongoing innovative ideas were present . After this diagnostic was released, attempts to uptake such innovations in TDR codesign are being made by at least one ongoing sustainability research-action program in Brazil. 2 Institutional and political affairs of the Brazilian state, however, have radically changed with the election of a far-right government in early 2019. This shift directly affected the country's ocean governance arena, dissolving GI-GERCO permanently and shadowing the pathway towards a more participatory process. The new government's aversion to participatory democratic structures impelled an updated assessment by Gonçalves et al. of the opportunity context for transformation in the Brazilian ocean governance system. Their analysis argued that the recommendations by Gerhardinger et al. still hold valid. Institutional entrepreneurs are still under pressure to lower the undesirable resilience of the dominant ocean governance system by introducing novelty using a series of tailored strategies, employed skills, and types of agency that can steer evolution towards an integrated and ecosystembased regime. This paper, therefore, reports on the development and application of a scenario-building net-mapping protocol to analyse the perceptions of high-level Brazilian governmental authorities on the structure and dynamics of the social network of stakeholders involved in the country's emerging MSP arena. What can these perceptions tell us about the challenges to transforming the current regime and governing the Brazilian ocean territory and resources in a participatory, integrated and ecosystem-based approach? The material and methods section explains the combined data collection and analytical frameworks developed to generate insights and recommendations. We then provide the core results and use interactive governance theory to discuss how the insights derived from the SNA analysis evidence how network-based marine spatial planning or other ocean sustainability research attempts may facilitate the identification of pathways to improve our shared 'capacity to govern the ocean' . We conclude by distilling five key potential contributions of participatory network mapping to radically transform ocean functional governability. --- Materials and methods --- Enacting future functional ocean governability narratives The use of inspirational stories or narratives is increasingly recognised as a key component of sustainability transformations . Visioning methods can potentially help social innovators shape institutional futures-but only when they are able to facilitate changes in understanding and behaviour of stakeholders in a given socio-political arena and influence what they expect and deem possible in the world . This paper reports on a participatory visioning method that generates qualitative and quantitative social network data on social networks to inform an assessment of present and future ocean governance capacities and interactions in Brazil. This is the third of a series of three papers, each using interactive governance theory to assess existing and envision future functional ocean governability narratives in Brazil. Complete descriptions of IG theory, terminology, and applications to assess coastal and marine socio-political systems are abundantly available elsewhere and in the context of the research program, this paper is a part of ). We used IG as a general heuristic to explore five functional ocean governability analytical steps in the Brazilian MSP socio-political arena, entailing: i) the presence and quality of governing interactions ; ii) the fitness of governing elements to properties of the systems-to-be-governed ; iii) the responsiveness of governing modes ; iv) the performance qualities of governing orders , and; v) the enabling and restrictive role of power relations . Gerhardinger et al. used the framework above to conduct document-based and key informant interview-based governability analysis of the nascent MSP arena . Building on the work of Jentoft and Chuenpagdee , these authors also started a series of pressing future narratives on how engagement with network-based MSP transition experimentation in Brazil might offer opportunities to evolve the socio-political arena's functional ocean governability in structural ways. However, Gerhardinger et al.'s research had so far predominantly engaged with non-state actors' perspectives and largely conducted metaphorical and descriptive social network research approaches . This paper advances this analytical series, now building on the insights of structurally explicit social network analysis. It draws attention to how our informants, formally designated members of a Brazilian federal government's MSP think-tank , perceive the social structures in the governing system they are fundamental parts of. We use a novel participatory network mapping routine to synthesise their perception of the structure and evolution of the MSP arena and to enable future visioning of social network properties and evolutionary dynamics. --- Net-mapping of the Brazilian MSP arena Participatory network mapping of perceived ocean governance networks has been used to assess features of social networks in marine protected area governance in Brazil and elsewhere as mentioned earlier. This study, however, is one of the first scholarly researches to report on the application of an adapted net-mapping protocol to facilitate an envisioning exercise of the future of ocean governance networks and to inform a functional ocean governability analysis. Holzkamper and Gerhardinger provide a more detailed outline of the SNA methods and associated descriptive statistics used for metrics applied to generate the visualisations we report in the present research paper. We used the novel net-mapping protocol to map the perceptions of members of GT-UCAM about the organisational structure emerging out of the incipient Brazilian MSP arena. The Secretary of CIRM generously contributed to the scheduling of focal group interview sessions which were undertaken in May 2018 in Brasilia, Brazil's capital city. Twelve net-mapping focal group sessions with 10 ministries3 involving several participants each were conducted, and audio recorded after formal written consent. Both the current structure and desired/anticipated changes in the governance system were mapped on these occasions. In the first step of the protocol, the informants identified the actors of the Brazilian MSP arena. Informants named the actors and attributed one of the following pre-categorised labels to them: 'public' ; 'resource user' ; 'non-governmental organisation' ; and 'public forum' . Key informants also pointed out those actors that were not active agents in current discussions regarding the national-level MSP process but should be integrated in the future . Further, our informants characterised how the actors of the Brazilian MSP arena are interrelated by drawing directed links between them. Links represented their perception of the different types of relationships, i.e. 'implementation or planning of common projects/actions'; 'exchange of financial, informational, or other resources'; 'inspection/complaints'; and relationships that 'need to be improved' . Informants also classified actors as already engaged or to-be engaged; and the relationships either as already established/existing or still required/anticipated. Finally, our informants' characterised the structure of political influence in the MSP arena by assigning levels of influence to each actor they had named: 'no influence' ; 'less influential' ; 'medium influential' ; 'quite influential' ; and 'very influential' . The outputs of the net-mapping focal group exercises were twelve visual depictions of the Brazilian MSP governance network. We digitised the quantitative data about actors, associated linkages and influence levels for the current and anticipated MSP arena and analysed the data using the software Gephi 9.0 and Rapidminer . While this paper emphasises structural changes in the network, we also collected in-depth qualitative data on the most important perceived interactions recorded on paper. We semi-transcribed and organised the qualitative data in a spreadsheet jointly with the respective quantitative data. Throughout this and our previous papers, we evoke qualitative information about the interactions to enrich the specific contexts of analysis. We conducted the following quantitative data treatments: we simplified actor richness in common categories to render analytical coherence ; we integrated different network data sets to allow for an overview of the perceptions of all government authorities who participated in our research; and , to account for differences in perception, we assigned weights to each time the link was named by a participant . We describe our data treatment and analysis in detail in Holzkamper and Gerhardinger . We use the following terminology for the aggregated networks: 1. The 'current' network is the network that informants perceive as established at the time of the interview . 2. The 'still required' network is the network which only includes those links that still need to be established, as perceived by the informants. It is the network that is anticipated to 'add on' the current network in the future as it evolves . 3. The current and the still required networks together form the 'anticipated' network . Next, we offer a summary of the SNA and discuss the functional ocean governability insights provided by the key informant's perceptions on actor diversity, actor linkages, link diversity and power distribution in the investigated MSP arena. Governability insights acquired through the informants' perceptions are then used to examine the opportunity context for the transformation of the Brazilian ocean governance system towards an EBM regime. --- Results and discussion --- Building functional ocean governability narratives Our paper is the first to provide far-reaching explicit visualisations of interactional structures of the Brazilian MSP arena , revealing its perceived patterns, and identifying evolutionary challenges and opportunities to achieve more radical narratives to improve each of the five functional ocean governability dimensions. --- Presence and quality of governing interactions In total, 144 interacting actors were identified in the Brazilian MSP network, and another 15 isolated actors are still anticipated to engage in MSP national discussions . We offer a summary of how SNA has informed the insights presented here on the evolution of functional governability in the MSP arena . Our first analytical step is important to elicit not only what type of network-based MSP interactions were perceived as present or still required, but also to underline how they influence ocean governability in Brazil. Interactive governance theorists argue that governability in coastal systems derives from the very existence of governing interactions of various types . The more actors exist and interconnect their governing system to the natural and social systems , the more actors can reach out to each other, creating a greater diversity of interactions. This entails connectedness between actors from different spatial and administrative levels, parts of society, and sectors. Increased connectedness can improve governability, depending on their qualities and the institutional conditions framing them . Kooiman and Bavinck suggest that governability interactions should have qualities that enhance social learning, representativeness, the effectiveness of communication and level of information flow. Our data reveal important mismatches between 1) the Brazilian MSP arena as it is perceived by the informants now and in the future and 2) what characterises a good ocean governability. Overall, our informants perceived an arena actively dominated by few, but very influential federal government actors. They also anticipate that this arena will remain relatively unchanged during the early design of the Brazilian MSP. The informants expect that public actors' reputational influence slightly decreases relative to the overall influence in the network. This signals the leasing of power to other agents in the MSP arena stemming from the addition of new players to the network. There are several currently isolated nonpublic actors that our informants anticipate engaging with the MSP network in the future . These actors are mostly forums and other representatives of commercial and sport fisheries, aquaculture, nautical tourism, and aquatic transport workers. However, the expected change is very small and arguably does not broadly affect the state of affairs. Moreover, our informants appreciate the ongoing and continued operation of highly . This analysis reveals a conservative perception of the evolution of MSP as a consensus among the informants: that the early phase of designing the Brazilian MSP will remain a governmentally enclosed process with emphasis on the federal level. Since ocean governability requires connectedness with actors operating at sub-national levels in the implementation of policies closer to where problems and opportunities arise, the lack of reputational influence and composition by state and municipal governments, for instance, signals such mismatch-hence the narrative points to continuing low governability. Moreover, interactive learning is another critical feature for promoting radical change in systems facing inertia, and it can lead to increased adaptiveness through a creative combination of a more diverse scientific and local ecological knowledge base . Most of the future MSP networking that informants anticipate originates from public actors, and to a lesser degree also from forums. The largely intra-governmental dynamic of the perceived Brazilian MSP arena and its timid evolution also greatly misses the purview of the potential MSP knowledge base that might be available outside the governmental sphere. Nevertheless, the significance of the message provided by our informants concerning what may be considered a 'timid' MSP arena evolution is not to be underestimated. Our results show critical progress is still needed to bring fundamental change in how and how much intragovernment actors interact with one another. First, the currently perceived multiplex Brazilian MSP network regime is dominated by 1st order interactions such as fiscalisation and project implementation, however, this is anticipated to change in the future. The current figure largely derives from the important role of public agencies in charge of controlling the implementation of sectoral policies and depicts the intensive participation of federal government actors regularly at CIRM and other subordinated forums. For instance, project implementation through GT-UCAM , is a very important component of the overall network. Because our informants' perspective is situated in their positions as designated members of this forum, this outcome is not Second, we may cite a shared expectation for the Ministry of Fisheries and Aquaculture to effectively join the building of an MSP arena in Brazil, given that it has by far the highest degree measure in the still required network. Fisheries management in Brazil has arguably been a disaster in the past years , with recurrent changes in leadership, extinctions of fisheries management forums and over a decade of discontinued fisheries statistics programs, among other severe socio-political and technical flaws. In 2018, Brazil has designated very large offshore marine protected areas around oceanic islands , but the fisheries sector and the Fisheries Ministry were not quite involved with decisions taken at a very high level in the government concerning the designations of these MPAs . This has caused fury by some pelagic fishing operators that faced potential economic loss, and criticism by scientists supporting an alternative optimal MPA design . This is just an illustration of how deficiencies in the existing approach to spatial planning still hinder Brazil's ocean governability: by lacking institutionalised MSP governing interactions and by the insufficient quality of representation and information flows. It is also interesting to note that links classified as conflicts are also perceived to increase in the anticipated network composition because as the MSP network evolves, currently, immanent conflicts may find their way into manifestation in the interactional structure. The assessment of the governing system's capacities also calls attention to three features that will be discussed next: goodness-of-fit, responsiveness, and performance in addressing the outlined challenges and opportunities in the Brazilian ocean problem domain. --- Fitness of governing elements to properties of the systems-to-be-governed This step of the functional governability analysis presupposes that the poorer the fit of governing elements to the properties of ocean systems, the greater the governability problems affecting the evolution of the Brazilian MSP arena. How appropriate are these governing elements in promoting a regime shift? We turn out the analysis here to the inner design of the nascent MSP arena in terms of how its evolution is perceived, i.e. if the arrangements anticipated by our informants seem fit to address the current low levels of integration in the implementation of area-based governance. Overall, GT-UCAM members clearly allocate the core of MSP activity within the federal government sphere . They might share a common ground in their view of the network's evolution. However, this view would not lead to radical structural changes leading to systemic improvements in functional ocean governability, such as opening up government-enclosed processes to stakeholders from different parts of society and administrative levels and assigning these stakeholders the influence needed to co-govern the ocean. These gaps also pose a major challenge to improving the fitness of governing elements, because in the common perception of our informants, there is no consistent pathway for major system-wide institutional change. Therefore, a long but critically important way remains ahead of CIRM to acquire the operational institutional steering capacities, and an appropriate normative long-term vision for the country's future blue economy. Improving Brazilian ocean governability will depend on achieving consistency between the emerging images, instruments, and actions and how they will address the enduring problems of fragmented, sectoral and non-inclusive ocean governance approaches. High hopes are currently placed in the ongoing debate around a new Marine Bill for the Brazilian ocean at the National Congress. This bill could provide a legal framework more explicitly addressing integration, the ecosystem-based and other principles such as the precautionary approach , as well as ordinances to improve procedural justice . However, our informants generally had not much to report on the relationships between this highly critical policy-building process and their work within GT-UCAM, as shown by the low number of meaningful interactions perceived with the National Congress . Achieving a minimum internal level of bonding social capital is still needed for GT-UCAM to become more successful in achieving a cohesive vision and consensual work plan for MSP implementation in Brazil. Nevertheless, our informants' shared perception points to necessary key changes in intra-governmental dynamics, underlined by the perceived importance of connections associated with the construction of norms in the anticipated MSP network. We can regard this awareness as a condition for governability improvement. --- Responsiveness of governing modes The three governing modes, i.e. self-governance ⇒ led by civil society; collaborative governance ⇒ co-led by multiple organisations; and hierarchical governance ⇒ led by government authorities, and the two-way character of ocean governance responsiveness '…those governing should be responsive to the wishes of the governed, and the governed to measures taken by their governors' are acknowledged in the literature . In this analytical step, higher governability in the emerging Brazilian MSP arena will derive from its effectiveness and ability to respond to ocean governance challenges . The greater the diversity of actors in the ocean , the greater the need for decentralisation of governance responses to deal with details and subtleties . But Chuenpagdee and Jentoft rightly note that decentralisation comes with a price, related to administrative order and efficiency challenges, rights, equality and the mobility of users that move across ocean systems. On the other hand, the more complex a system-to-be-governed is, authority is required by a central government to facilitate such coordination . Gerhardinger et al. argue for a nested 'coevolutionary polycentric hierarchical' ocean governance model for Brazil. Governance needs to recognise the fact that ocean systems are spatially interconnected. Advancing an approach that addresses problems at different geographical scales would require multiple and simultaneous levels and modes of governance in the organisational hierarchy. This approach may nurture participation and institutional learning arising from a more sensitive hierarchical approach, in synergy with the enforcement of strategic objectives through negotiation and compliance with and by resource users. Our study explores the perception of key informants who are situated at the top of hierarchic modes, and hence are biased given their emphasis on the role of the federal government in the evolution of the MSP arena. Our results show that the informants have limited awareness of the potential contributions of linkages with other emerging or ongoing collaborative or self-governed responses to area-based challenges and solutions in Brazil. For instance, we refer to the lack of coordination between responsiveness with different state powers ; the modest levels of importance of the contributions of the only federal multi-stakeholder ocean governance forum in Brazil to advance MSP, namely the Coastal Management Integration Group ; or poor coordination of intra-governmental sectoral responsiveness as in the case of major flaws in the implementation of specific policies and in how these relate to the MSP arena. We may also refer to other national or subnational areabased policy and network-building initiatives that have not been perceived at all, hence probably not deemed especially relevant to be engaged in the anticipated coevolutionary pathway. A case in point is the bottom-up claim for a new spatial marine management legislation to be submitted to the National Congress, arising from a massive campaign of small-scale fishers' groups throughout the country . They were also mostly unaware of the fisher's organisation's pledges for the implementation of the Voluntary Guidelines for Securing Sustainable Small-Scale Fisheries in the Context of Food Security and Poverty Eradication in Brazil, which strongly call for the protection of small-scale fisheries territorial rights and marine tenure systems . Moreover, given the range of actor types perceived by our informants, it is revealing that there were very few mentions of 'networks' of organisations, despite the growing recognition of their potential to promote bridges at science-policy interfaces and to improve democratic governance of oceans more generally. Gerhardinger et al. report an incipient engagement of 64 ocean networks in joint transdisciplinary practise during the Rio + 20 and the Peoples' Summit. These authors had identified 39 non-state networks . Interestingly, only a few of such networks were mentioned by our government informants through participatory network mapping. This suggests their lack of understanding of the diversity of potential actor types and hence knowledge availability and accessibility, i.e. how to mobilise them to support the evolution of MSP in Brazil. Finally, the potential role of linking up with actors involved in ongoing innovative subnational MSP processes have not been pointed out by our informants. An example is the highly collaborative multi-stakeholder forum formed in Santa Catarina state around the Babitonga bay, that has been supporting integrated, area-and ecosystem-based coastal governance even without a formally designated legal mandate . Our informant's eminent lack of perception of the area-based initiatives outlined above suggests that these are not considered immediately important to steer the Brazilian MSP step-zero phase. We argue that linking these and other collaborative solutions with more sensitive hierarchical processes that go beyond the largely hierarchical and self-contained modes of response perceived by GT-UCAM members represents a great potential for innovation in area-based management solutions that remains to be explored. --- Performance of ocean governance orders The last aspect in the assessment of governing system capacities is a closer look at the performance of three different ocean governance orders and their capacities to function, operate and lead to desirable outcomes. Interactive governance theory postulates that the better these orders perform, the higher the governability ; but performance should be assessed in face of what the governing system is able to deliver and should do to enhance it, in other words 'what is good enough' . This stresses that there might be limits to how governable the immense Brazilian Exclusive Economic Zone is, and to the level of performance one can expect under present and anticipated circumstances. While the implementation of projects is dominating in both current and anticipated networks, the building of norms is the type of connection anticipated to increase most. A high-level working group has been designated by the Brazilian federal government ever since 2013 to statutorily inspire new MSP norms. But the fact that it has been in operation for 8 years and has not yet reached a conclusion nor presented a consistent way forward is worrisome. The current state of the network offers an illustration of how the lack of an appropriate MSP framework is already hindering conflict resolution. For instance, we may refer to the recent case of conflicts with scientists and fish workers emerging out of the sub-optimal design of new offshore marine protected areas; or even the low levels of our informant's perceived importance of the adoption of indicators such as transparency, intra-and inter-generational justice to steer the advancement of the emergent MSP arena . This assessment of ongoing conflicts is in line with the fact that relations indicating conflict are anticipated to increase significantly. In general, Brazil is known to have achieved low levels of performance in the implementation of integrated coastal zone management policies . While there are no formally established instruments to regularly assess in which ways these policies are being effective, the baseline is even worse if the question of performance encompasses what goes on beyond the coast to include offshore marine waters at the EEZ level. This highlights the urgency of institution-building and principle setting in relation to MSP so that the principles that some key stakeholders consider particularly important can be adopted. It also means that no clear accountability structures and mechanisms exist for social licencing, nor are there procedures in place to distribute ocean commons in an equitable way. Meanwhile, the narrative of the blue economy or blue growth as an important force in the future Brazilian economy has gained traction in the federal government and academic circles. For instance, a new inter-ministerial working group at CIRM has been recently designated to discuss 'Ocean Gross Domestic Product' even though a GDP approach has been subject to profound criticism as it may not reflect human development . However, our results indicate a low level of preparedness of the current and the anticipated Brazilian ocean governance system to perform well on the backdrop of the levels of economic growth expected by some blue economy enthusiasts. Now, with the COVID-19 virus pandemic, the already poor social licencing of the Brazilian ocean resources risks becoming even more unjust if neoliberal policies are further accelerated by de-regulation of coastal development fostering further ocean grabbing. This scenario implies the hypothesis of further judicialization of socially-environmentally untenable development projects in the near future. This has the potential to increase the speculative atmosphere around coastal development, a pattern that in our opinion should not be welcomed by corporate interests in a blue economy setting. This is a serious concern given the tone of recent dialogues at the high-level federal governmental sphere. For instance, the Ministry of Environment loudly praised the government for taking advantage of the pandemic to accelerate massive deregulation, while neoliberal Brazil's Ministry of Economy Paulo Guedes stated '…we are going to earn money using public resources to save big companies. Now, we will lose money-saving small companies.' . How to confront the MSP arena's path-dependency in terms of such performance gaps and under dominant neoliberal mindsets is a critical challenge for actors willing to transform the ocean governance system. This challenge, we argue, would be more appropriately dealt with by internetwork activities capable of accelerating the coordinated scaling of innovative area-based solutions through principlebased policy-building . The adoption of what is broadly known as 'sustainability transitions experiments' or 'transition management' that combines peer-to-peer learning and a range of other networkedknowledge to action approaches between social innovators are a promising way forward for the Brazilian MSP arena . --- Enabling and restrictive role of power relations Finally, the functional governability analysis of the nascent MSP arena should pay attention to another key aspect of governing interactions, the enabling and restrictive role of power relations . Power concentration with certain stakeholders may constitute a governability challenge . Therefore, a closer look at how it is perceived to be distributed among actors in the Brazilian MSP provides insights on the extent and conditions under which the conditions under which the perceived evolution of power relations might facilitate or restrict area-based governance to achieve desired outcomes. In our study, the reputational influence was perceived to be distributed differently unevenly among actors in the investigated MSP interactional structures: currently, the arena is largely dominated by a few very influential federal government actors . In addition, our informants do not expect major changes to occur beyond achieving better intra-governmental cohesion. Business were seen as the second most influential actors , signalling the potential prevailing influence of private interest on Brazilian federal government ocean policymaking, which is even above the perceived influence of public interest groups . Business actors are also more important targets by federal government actors than public interest groups, in our informants' view. Given that what is at stake here is a precious public patrimony, the implications of such perceptual features for actual ocean policy-making requires vigilant and sustained transdisciplinary sustainability research and attention by concerned actors in the MSP arena. Several actor subtypes, which are key players in MSP have not been perceived as influential, nor significantly present in the arena. For instance, the relatively low share of composition and influence by forums can be associated with the incipient nature of MSP in Brazil or even the lack of appropriate participatory structures for ocean governance in Brazil. Coastal state governments are also major authorities in resolving problems and enabling opportunities in the coastal-marine zone. However, they have a surprisingly low share of reputational influence in preliminary MSP discussions according to our informants. One could justify that MSP would predominantly embrace offshore areas, beyond the mandate of integrated coastal zone policies; but it is unequivocal that MSP should be inextricably linked to coastal management and development hence, the need to engage with state public actors early on. Furthermore, the notably low levels of the composition of some other actors such as social movements and cooperatives, state government stakeholders, multi-level multistakeholders, and the press, among others, further depict an incipient, poorly organised arena that is still not much permeable to the influence of diverse societal structures. The limited level of composition of and reputational influence in the network by these important actors, as well as the implications of their apparently only modest contribution to shaping the Brazilian MSP pre-planning stage, raises critical points for future research, and action by agents in this arena. Some actors show a relatively high reputational influence in comparison to their numbers in the arena. Given our informants' background and official mandate in designing MSP pre-planning in Brazil, it is not surprising that federal government actors and stakeholder forums are seen as highly influential. However, the outstanding relative reputational influence of academia, labour organisations and state companies are noteworthy. The potential role of these highly regarded actors in the transformation of the MSP arena should be further explored by future research. The highly regarded reputational influence of academia can signal an appreciation for advancing a science-based MSP agenda. On the other hand, Gerhardinger et al. note that our informants had a focus on technical knowledge and expertise, not on a more diverse knowledge based including stakeholders' knowledge. Nevertheless, we argue that academics interested in the evolution of MSP should use every opportunity to stress the importance of expanding and diversifying the knowledge-base in order to avoid an overly top-down, technocratic and depoliticized MSP arena. Our results show that some particularly influential actors are perceived to be in a much-privileged position to steer the governing system in their favour. This is a central governability challenge because it may render the MSP arena unable to cope with problems and opportunities in an environmentally sustainable and socially equitable way. In 2018, the current and anticipated state of operations in the arena was largely not inclusive. This condition probably limits the arena's capacity to deliver cross-level knowledge exchange, to transform conflicting into synergic development pathways, to foster other actors' buy-in of future MSP plans and to build social capital . On the other hand, our qualitative data indicate several of our informants are aware that social participation is not desired at this stage, since a minimum level of trust, coordination and cohesion first had to be achieved within federal governmental structures before opening the arena for other actors. We argue that this notion seats at the top of a wickedproblem challenging regime transformation in Brazil. Such cohesion and inter-ministerial coordination are hardly possible to be achieved under the continuous political and institutional instability the country has been facing; at least since 2015 at the start of the quiescent phase of MSP pre-planning in Brazil . The wickedness of the problem spans from the fact that while the innovation process seemingly becomes halted, social injustice and environmental degradation thrive worryingly because of poor governability. While the prospects shared by our informants are not at all alleviating in this regard, a window of opportunity has been pointed out by one of the informants, offering a possible leveraging point for actors willing to influence regime shifts in the Brazilian MSP arena. The participant anticipated the creation of an entirely novel collegiate body for MSP in the country, which would be responsible to steer MSP implementation through a more inclusive governance arrangement. This assumption represents bold anticipation of a possible outcome of the workings of GT-UCAM, and the most progressive of all visions in terms of transforming the current ocean governance system towards an inclusive and integrated regime. Nevertheless, we highlight a pressing concern that actors attending and legitimising new MSP arenas should be aware of. There is always a risk of MSP becoming an instrument for further marginalisation and power asymmetry, reinforcing social and cultural vulnerabilities of particularly less influential actors such as small-scale fish workers . These risks will be higher in Brazil if the MSP agenda led by the federal government remains void of social participation, or even if merely discursive power is warranted providing a semblance of democratic legitimacy that in fact reinforces the neoliberal exploitation rationale . Quesada-Silva et al. has recently proposed a stakeholder participation assessment framework to support strategic planning and evaluation of participatory MSP processes, that can potentially inform actors concerned with the transformation of the Brazilian ocean governance towards an integrated regime. Their assessment indicates that the choices made by federal governmental authorities on the level of stakeholder inclusion will be critical in Brazil; even before MSP moves to an advanced operational phase, actors should decide upon zones and build, implement, monitor, and evaluate spatially based norms and plans. Fostering inclusive ocean governance in Brazil will require a more diverse constituency in the ongoing and upcoming phases, i.e. normative and strategic MSP planning phases. Bennett' and collaborators' overview discusses three principal stakeholder types , three fundamental sets of interactions , and four questions that need to be reflected upon to steer inclusive governance of the blue economy, including; i) how the ocean will be developed and by whom; ii) how and to whom benefits will be distributed; iii) how harms will be minimised; iv) who will bear responsibility for environmental and social outcomes. While the perceived Brazilian MSP arena seems active in important components of this overview, such as the abundance of public-private interactions recorded, not much activity pertaining to community-industry nor collaborative management interactions were perceived at the whole EEZ governance system-level. The shared perception of our interviewed GT-UCAM members represents a highly influential point of view and thus entails responsibility in the way the four questions enlisted above will play out in reality. These are not easy questions requiring superficial thoughts and policy measures. Rather, the informants' perceptions represented herein through participatory network mapping emanate from the highest levels of the governing system with potential repercussions on the well-being at the very fabric of Brazil's peopled seas. --- Networked solutions to ocean governability transformations Given the accelerating increase of various impacts to ocean ecosystems in the past decades and our general lack of capacity to respond to the implicate governance challenges in the Anthropocene era , transformative endeavours should identify and remain vigilant to nested and interrelated opportunities contexts for promoting regime shifts in ocean governance systems. The search for disruptive alternatives in the step-zero process of MSP in Brazil faces challenges that ocean stakeholders must overcome to radically improve the governability of the Brazilian EEZ, the so-called 'Blue Amazon.' The research program this paper is a part of has engaged with various analytical approaches to identify sets of functional governability problems and provide tailored recommendations or opportunities to improve societal capacities to govern the Brazilian ocean using networked knowledgeto-action solutions. Figure 3 summarises these functional governability narratives based on Gerhardinger et al. ) and the present paper. The roadmap for the needed changes is informed by theory and based on empirical evidence. However, we should not be naive in our expectations-we agree with Clarke and Flannery's notion that MSP might not be in the '…vanguard of the assault on broader neoliberal regimes.' These authors have provided an insightful illustration of how England suffers from a post-political MSP in which engagement and meaningful debates are minimised, resistance to transforming the status quo remains, and contestation is replaced by elite and technocratic-managerial governance. These authors point out five interrelated modalities of depoliticization in MSP that are symptoms of a post-political condition, with correlations possibly drawn to the Brazilian problem-domain, including 1) neoliberal governance : we found several signs that such policy mindset is vividly present in the rationale of Federal Government leadership, and are concerned that the high influence of business actors in the MSP arena and an emphasis on blue growth may lead to reinforcing social injustices and inequalities. Choreographed participation : while the choice of not including a broader array of social actors in GT-UCAM may render intra-governmental cohesion to discuss MSP affairs, it may also result in loss of awareness and sensitiveness to pressing blue justice issues and conflicts that exist in the real ocean. Moreover, the deterioration of democratic environmental forums the country has witnessed has tremendously disrupted the participation of civil society in MSP evolution . Path dependency : our results show they were clearly not able to envision a satisfactory pathway to transform ocean governability in more fundamental ways and have been struggling to navigate the institutional and political turmoil in the country. Technocratic-managerialism : the government-led process largely disregards the knowledge and expectations of ocean users from the on-set of MSP and perhaps the influence of academia, therefore risking it becoming an overly top-down, technocratic, and depoliticized endeavour. The illusion of progressive change : the high-level MSP think-tank we studied seemed quite limited in scope and effectiveness after 8 years of operation, with no major outcome and/ or disruptive attempt nor substantiated vision to confront complexity with a few exceptions . Clarke and Flannery suggest core issues that need to be addressed simultaneously to allow for what has been later termed a 'critical turn' in MSP . Their solution proposes deliberately redesigning and transforming marine governance regimes by developing strategies to empower stakeholders and recentralizing conflict in marine governance. While our informants are aware that conflicts will become more pronounced as the MSP arena evolves, they largely lack the capacity to redesign and transform accordingly, nor have the means to empower stakeholders. While our informants anticipated some changes in network composition and influence in the future, the envisioned network is not fundamentally different from the current network in several important ways. Our informants perceived a nascent Brazilian MSP arena dominated by a few very influential federal government actors. While slight changes in network heterogeneity potentially signal the leasing of power to other agents in the future MSP arena, our informants shared a conservative perception of its evolution by anticipating it to largely remain self-enclosed within the federal government in the upcoming years. This network perception highlights the eminent need for vertical integration, between governmental actors from different administrative levels, as well as for a horizontal integration that spans sectors and parts of society, e.g. the link-up of fisheries management to integrated area-based ocean governance and the inclusion of relevant actors outside the public sphere like fishers. Only one informant boldly anticipated a progressive outcome of the workings of GT-UCAM, in terms of transforming the current ocean governance system towards a more inclusive and integrated regime. What insights can we derive from our participatory network mapping on the MSP network that can potentially support actors pursuing regime shifts in complex regional ocean governance systems? Our SNA analysis informed a thorough assessment of how governable the Brazilian EEZ is and could become given the structural evolutionary challenges we identified . Below, we synthesize the insights gained in our past functional governability assessment series and additionally distil herein the following five aspects of future governability narratives as potential contributions of the participatory network mapping method to transdisciplinary sustainability research, in particular, to advance networked solutions to the ocean challenges . --- Envision situated interactional evolutionary pathways that are more likely to leverage regime shifts in the socio-political arena Our participatory network mapping approach was able to address what is pointed out as a major deficit in most ocean governance studies: to feed a theoretically anchored conceptualization of change in ocean governability with empirical insights . The structurally explicit network analysis we conducted is the first to allow for the visualisation of the perceived overall Brazilian ocean governance arena, the very existence and quality of actors and their perceived interactions within and between public actors and others . The current emphasis of the multiplex MSP network on problem-solving , is anticipated to shift to the prominence of norm-building with a potential for increasing the manifestation of conflicts. We were also able to identify, from a highly situated perception of governmental institutional entrepreneurs at the forefront of innovation, some critical signs of potential hierarchic mismatches hindering innovation , that need to be addressed by MSP actors. MSP is perceived as a governmentally enclosed process with emphasis on the federal level. There is a lack of integration of lower governance levels, and of important agents from other spheres of society. Therefore, our informants' overview of the Brazilian MSP arena evolution might not be considered alternative and appropriate enough to anticipate an integrative pathway to promote a regime shift at the whole system level in the near future. Our analysis instead reveals important gaps in the presence and quality of interactions that need to be addressed within federal government interactional structures. Nevertheless, the imagination of one key informant of a potential new collegiate forum represents leverage to inspire systemic quantitative and qualitative change in governability. Individual and unique contributions evoked by participatory SNA can potentially help other ocean stakeholders, importantly transformative agents within and/or outside federal government organisations, to more accurately streamline cross-network knowledge-exchange and political efforts required to transform the untenable ocean governance regime. The net-map activity inspires the informants to think about alternative approaches and to make their thoughts explicit. However, we contend that this method would be more useful if nested in broader and sustained transdisciplinary programs. For instance, networked-based sustainability transition experiments offer a contextually tailored 'process-framework,' rendering social innovators real opportunities to navigate improvements in the overall presence and quality of areabased governance-related knowledge exchange at any given problem-domain. --- Build a shared understanding of and anticipate transformative coevolutionary dynamics Concerning the question of how to improve the compatibility of ocean governance elements through MSP in Brazil, our results highlighted gaps in perception that may be addressed by transformative agents. The poor fit of perceived MSP-related interactions to the social and natural systems-to-be-governed sets the context for our informants' institutional entrepreneurship standpoint. Our informants' conservative and non-cohesive perception of the evolutionary pathways towards a new regime is an insight expanding the understanding of the institutional dynamics impeding policy integration in the country. Our analysis highlights a potential role for participatory network mapping in supporting a more coordinated policyinnovation process through imagination and rationalisation of appropriate institutional changes that may steer ocean governance regime shifts. Our results explicitly reveal interactional structures, hence the possibility of building a shared understanding and anticipation of current and required coevolutionary dynamics. The method of merging the perceptions of actors sharing a socio-political identity and purpose is a practical case in point. Therefore, the outcomes of this paper may give feedback to ongoing and future social learning processes led under the umbrella of GT-UCAM, but also ocean actors' institutional entrepreneurship strategies at large. --- Build awareness of the potential synergies among disparate but innovative area-based responses Our participatory network mapping and analysis highlighted important gaps in informant awareness beyond their largely hierarchical standpoints on ocean governance responsiveness. In particular, sensitivity seems low towards potential sources of area-based innovations in bottom-up and collaborative approaches as well as networked responses. The maintenance of such a low level of awareness by highly influential agents at GT-UCAM will probably limit the evolution of a more symmetrically responsive ocean governance arena. Provided that future governability will at least be partly derived from a move towards a polycentric hierarchical coevolutionary ocean governance view, streamlining such disparate governing responses is a key challenge. We argue, however, that networked knowledgeto-action agencies operating at an 'inter-network' level are more well suited to confront this challenge because of their additional permeability across the fragmented structure. The use of participatory SNA nested as part of longer-term sustainability transition experiments can illuminate what potential synergies will need to be activated to progress towards more transformative coevolutionary pathways of MSP arenas. Thus, these agencies may be able to create the space for building collective awareness and responding to untenable social structures and dynamics. --- Specify inter-network-based limitations and the necessary changes underpinning potential leaps in performance levels The net mapping exercise gave form to collective perceptions on emergent improvements needed in performance at all orders , from problem-solving, institutional building and principle-setting. Among the evolutionary challenges for transforming governability through gains in performance this paper reports on, we highlight the need to overcome the narrow and unambitious views of the current GT-UCAM architecture. This in itself consists of a wicked path-dependent pattern signalling the persistence of the lowperformance qualities in the MSP arena and ocean governance system at large. In face of pressing demands for equitable and environmentally sustainable ocean economic development and growth, the slow progress of the Brazilian MSP pre-planning phase is worrisome as it has still not been able to augment the performance of the ocean governance system. We argue that transdisciplinary research-action approaches are methodologically fit to allow for the construction and collective appropriation of more sound visions and principles to steer the better performance of the future desired ocean governance regime. These approaches offer rational and targeted opportunities for networks to measure changes in the performance of area-based governance attempts where the net mapping protocol can be adapted and tailored to specific contexts. Therefore, our participatory network mapping methodology not only supports the specification of what structural changes need to occur for a leap in performance to emerge. It also highlights the limits to what our critically positioned informants perceive as possible within their mandates. --- Make explicit power asymmetries to stir structurally tailored strategic action by less influential groups Our results elicit critically important signals in the evolution of power structures in the Brazilian MSP arena that will likely affect the implementation of hierarchical polycentric ocean governance in Brazil. These signals include the risks of prevailing influence of private interest on Brazilian federal government ocean policy; lack of governance forums open to public interest groups; lack of perceived engagement of coastal governments in the innovation process; low composition of historically vulnerable actors ; and the under-appreciated value of academic and social knowledge-networks in the MSP arena. If unaddressed, these trends may render the MSP arena incapable of reaching environmentally sustainable and socially equitable paths, hence the importance of expanding and diversifying the knowledge-base in order to avoid an overly top-down, technocratic and depoliticized MSP arena. While major system-wide changes in the arena were not foreseen by our informants, they pointed out critical intra-governmental changes in the interactional structure needed before major shifts can occur. This remains challenging given that inter-ministerial coordination and cohesion has been hardly possible under the continuous political and institutional instability Brazil faces. Only one informant offered a possible leveraging point for transformation based on the creation of a new, more inclusive collegiate forum. Given their importance, these signals in the evolution of the MSP arena should be considered in future sustainability research. In particular, we urgently call for GT-UCAM members to confront asymmetrical power relations by embracing the critical but proactive civil society and multi-level participation in the evolution of the MSP arena. This paper has outlined how participatory network mapping insights can benefit transformative action. We made a strong case for the potential role of inter-network strategies and actions to confront the symptoms of post-political MSP pathways and risks of becoming an instrument of further marginalisation and power asymmetry. Participatory network mapping can enable actors' visualising, learning about and become vigilant to power asymmetries. Tailored confrontations are needed to start fixing asymmetric power relations not only in their discursive but hopefully also in their structural manifestation in the emerging MSP arena. We argue participatory network mapping holds untapped potential contributions as a method to enable anticipatory governance and advance transformational dialogues at the forefront of transdisciplinary attempts to promote regime shifts in ocean governance systems. While this paper is the final contribution of a three-stage assessment of functional governability in Brazil, we contend that both the stepwise diagnostic approach developed and the generated narratives , may hold transferable contributions to ocean governance systems across the globe. informants to the project 'Coordination of knowledge-networks for the co-evolution of Brazilian polycentric ocean governance systems' ; we acknowledge the key contribution of the Secretary of the Interministerial Commission of Sea Resources for their support in setting up the logistics for the conduction of the focus group discussions with GT-UCAM members. EH acknowledges the support of the Heinrich-Böll-Foundation. We also thank FAPESP for supporting MRC , and the Brazilian National Council for Scientific and Technological Development for supporting AT and the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior-Brasil for their support. The authors acknowledge the support of Fundação Grupo Boticário, Instituto Linha D'Água, Instituto Costa Brasilis and Future Earth project for supporting networked knowledge-to-action experimentation during the period of this research project , contributing to the generation of qualitative insights on the evolution of the marine spatial planning arena investigated herein. --- ---
The globally accelerating environmental crisis calls for radical changes in the governance of ocean resources towards a more sustainable and socially equitable world. Transdisciplinary sustainability research and networked knowledge-to-action approaches are critical parts of this change. The effective application of such approaches still puzzles social actors (individuals and networks) willing to act in more transformative ways. We conducted twelve participatory network mapping activities to assess the perception of high-level federal government institutional entrepreneurs on the structure and dynamics of an emerging socio-political arena for marine spatial planning (MSP) in Brazil. Our informants, mostly cognizant of their own intra-governmental structures, anticipate the MSP arena to remain self-enclosed, with changes only occurring within the federal government structures in the coming years. Their perceptions were largely conservative, narrow, and unambitious and therefore unfit to generate regime transformations. The limited awareness of response capacities beyond the federal government potentially leads to the endurement of the low performance already present in the MSP arena. Results from the participatory network mapping informed a five-step functional ocean governability analysis pointing to key potential contributions to support a critical turn in MSP: 1. envision situated interactional narratives to leverage regime shifts; 2. build a shared understanding of and anticipating transformative coevolutionary dynamics; 3. build awareness of the potential synergies among disparate but innovative area-based responses; 4. specify inter-network-based limitations and the necessary changes underpinning potential leaps in performance levels of ocean governance orders; 5. make power asymmetries explicit to stir structurally tailored strategic action by less influential groups. We discuss the potential role of inter-network strategies and actions and how they may confront the symptoms of depoliticized MSP pathways and the risks of it becoming an instrument of further marginalisation and power asymmetry in Brazil.
Introduction "Radical simply means 'grasping things at the root'." -Angela Davis Much of human research has centered on how adversity, including lower individual socioeconomic position , becomes biologically embedded . With evidence from physiology, genomics, and neuroimaging, our knowledge regarding the impact of socioeconomic circumstances on mental health has progressed remarkably ). Despite considerable empirical evidence demonstrating the biological burden of socioeconomic factors, attempts to deliver evidence-based interventions to address these types of adversity have been laborious and with few victories . We propose this impasse is because the majority of human neuroscience work does not systematically include these factors in study designs or situate findings within existing social inequities, including structural racism [definitions of terms used throughout the article are provided in Table 1 ]. Historically, mental health research braved the matter of social inequities. However, in the 1980's, a shift towards biological perspectives caused the focus to diminish . More explicitly, while research on physical health has increasingly built upon social determinants of health and disease ), the dominant narrative in mental health research embraced biological models of disease. This shift decreased the number of studies investigating how structural drivers of social determinants impacted individuals . In a similar vein, the association between neurobiology and neighborhood socioeconomic factors has received even less attention than associations with individual-level variables ). This may reflect study design limitations; there is simplicity in collecting individual-level measures directly from the participant, and the benefit of evading the expenses associated with larger sample sizes, which are often required to observe significant effects of neighborhood factors. Another explanation of this trend is that neuroscience research has been implicitly biased towards using a "Freedom" model of health, which suggests people are solely responsible for their health and related behaviors i.e., individual-oriented theories of disease causation ). This line of thinking perpetuates harmful stereotypes of genetic inferiority and pathologizes those living amongst poor socioeconomic conditions , as it attributes health disparities along sociodemographic categories to the individual or essential characteristics of members of the marginalized group. Though many issues arise when defaulting to the Freedom model, perhaps most insidious is that it complements the "deserving poor" argument or "boot-strap" ideology, which alleges people are in specific socioeconomic positions because of individual differences in ambition or talent. To be clear, this stance is not reflected in data. In fact, upward mobility rates in the United States have continued to decline over the past 10 years. Variables capturing the effects of structural racism, such as race and place remain the strongest predictors of mobility . Thus, the "Freedom" model-and those akin to it-disregards the longstanding inequities in opportunity in the United States and, when applied to neuroscience research, exonerates the oppressive structures which maintain inequities. Broad mechanistic questions about socioeconomic circumstances can be challenging to capture because the measures are generally considered macro factors, instead of proximate mechanisms which interact directly with an individual's neurobiology. "For this reason, " as it refers to the reason why socioeconomic circumstances can be challenging to captur. However, various models have highlighted the myriad ways our social systems can interact with the brain, as the brain works in part as a social organ, consistently informed by our interactions with our environment . Further, dimensions of socioeconomic circumstances, such as social and material conditions, are --- Term Definition Inequities Differences which are unjust, unfair, and avoidable . Inequalities, a closely-related concept, refer to the measured difference in a particular outcome . --- Chronic stress Repeated exposures to myriad multi-level risk factors and unstable access to necessary resources . Structural racism "The macro-level systems, social forces, institutions, ideologies, and processes that interact with one another to generate and reinforce inequalities among racial and ethnic groups" . --- Law The mechanisms of legal systems, including the political processes, policies, and legal practices such as enforcement . --- Critical race theory A framework used to analyze the historical and contemporary forms of structural racism . --- Positionality How a person's sociopolitical identity and lived experiences shape their position in society. Ultimately, this position influences how a person interacts with and perceives the world . --- Intersectionality Rooted in Black feminist pedagogy, a framework used to analyze "relations between systems of oppression which construct our multiple identities and our social locations in hierarchies of power and privilege" . related to other, more proximal factors, which have causal roles in mental health risk. On the environmental side, these proximal factors can include prenatal and postnatal nutritional deficiencies and SEP-linked exposures to environmental toxins. They also include the interaction of crucial non-physical socioeconomic factors such as parental education. We focused on studies of neighborhood disadvantage and neurobiology in this perspective because research in this area inherently emphasizes place and context rather than the individual. This work marks a recent and fervent shift toward recognizing that the broader sociopolitical context affects how individuals interpret stimuli and navigate within social groups. This further highlights the need for the field to firmly declare that societal inequities exist and are relevant to the understanding of brain structure and function. Few neuroscientists would endorse the contrary, but by excluding these variables and disregarding societal influences, the resulting scientific products lack this context. By including variables at multiple levels that better capture the forces and dynamics related to SEP in human neuroscience experiments, researchers acknowledge that some of the variability in individual differences-whether in biological functioning, behavioral task performance, or clinical symptoms-is attributable to the sociopolitical stratification in society . Studies on the relationship between socioeconomic factors and neurobiology are at the forefront and intersection of public health, neuroscience, and sociology, and in this perspective paper, we leverage knowledge across these disciplines. After briefly reviewing theories linking socioeconomic factors to mental health, we highlight evidence that neighborhood disadvantage is associated with neurobiology. This work would be strengthened by positioning research questions and findings within sociological and historical context. Although we center neighborhood disadvantage, the issues presented in this article are shared with studies on individual SEP and are relevant to all human neuroscience research. Individual SEP and neighborhood disadvantage may impact biological systems through different mechanisms. However, socioeconomic variables at multiple levels share structural racism as an upstream determinant. We call for future studies to name structural racism, define neighborhood disadvantage as an institutionalized form of racial inequity, and interpret how the effects of racism are captured in methods and manifest in results . Finally, we describe areas and steps for improvement, including acknowledging historical and current inequities, reporting relevant data, and funding research that prioritizes the needs and participation of historically excluded communities. These recommendations are based in the belief that neuroscience could more critically address mental health disparities if an anti-racist radical framework-which considers the root causes of inequities-was applied. --- Theories linking socioeconomic factors to health Researchers have developed various socioecological theories to better understand how environmental exposure can uniquely interact with genotypes and phenotypes to differentially impact human development and mental health . For example, Social Causation Theory posits that poorer socioeconomic circumstances increase an individual's risk for mental health conditions, including post-traumatic stress disorder , depressive disorder, and generalized anxiety disorders . This increased risk is partially due to greater environmental resource scarcity and higher environmental stress, which may affect neurocognitive development in childhood and adolescence . For an individual, alterations in neurocognitive development may represent biological risk for mental health conditions. Over time, these effects may reduce socioeconomic achievement in adulthood, creating intergenerational patterns of socioeconomic-related stress for oppressed communities . The timing and accumulation of factors associated with poorer socioeconomic circumstances across the lifecourse are also identified as a crucial element in frameworks focusing on the embodiment and embedding of social, structural, and environmental factors and their relevance to biological development and functioning. Though a detailed discussion of "lifecourse exposome" studies is outside the scope of this article , these approaches highlight the importance of dynamic upstream structural, sociopolitical, and temporal factors in the study of biological and psychological functioning. Another set of theories focuses on individual differences in genomic variations and how these may be related to an individual's susceptibility to eventual mental health symptoms. Differential Susceptibility Theory advances the claim that individuals can inherently differ in their susceptibility to stressors, and that individuals' environments may interact with genetic variations and behavioral outcomes "for better or worse" . Through this theory, researchers have focused on identifying the moderating influence of environmental exposures on developmental and life outcomes. For example, previous work in this area has focused on psychological markers such as negative emotionality as potentially significant individual susceptibility factors . In Differential Susceptibility Theory, both positive and negative environmental conditions are theorized to influence an individual's susceptibility to mental health outcomes. A contrasting model is the Diathesis-Stress Model, which suggests that individuals have a baseline level of predisposing factors for any given mental health condition. The point at which individuals develop symptoms depends on the interaction between the risk factors and the degree of stress. One form of diathesis is biological and includes neurophysiological dysregulation. When repeated instances of stress occur, this can cause biological changes that result in more sensitivity to stress in the future, meaning that less stress becomes necessary to activate the requisite processes that may facilitate mental health symptoms . Notably, the Diathesis-Stress Model is considered a deficit-only model, focusing on susceptibility to negative environments. Together, the reviewed theories highlight the importance of considering mechanisms and factors at various levels in studying mental health outcomes and neurobiology. Though these theories did not originally consider how structural racism explained differences in environmental conditions, new applications of these theories identify racism as a determinant. In order to conduct research on the impact of socioeconomic factors on neurobiology properly and equitably, it is crucial to include structural, social, and historical context, and how this may contribute to differential susceptibility and vulnerability and their impact on health . --- Neural correlates of neighborhood socioeconomic disadvantage Neighborhood disadvantage measures [e.g., poverty rate, composite measures such as the area deprivation index or social vulnerability index, concentrated disadvantage, etc.; ], established with a geographical ID and through a process of geo-coding , predict mental health symptoms, even above individual socioeconomic measures. Greater neighborhood disadvantage is associated with higher stress levels and symptoms of depression , anxiety , and PTSD . Biological correlates of neighborhood disadvantage span various biological systems. Researchers have examined the effects across different measures of stress responding, such as cortisol reactivity , stress-accelerated aging , and immune system regulation . In nearly all proposed mechanistic models, neighborhood disadvantage is conceptualized as chronic stress and therefore hypothesized to influence mental health via stress-responding pathways . The impact of neighborhood disadvantage on neurobiology continues to grow as an exciting line of research . Thanks to large-scale studies such as the Adolescent Brain Cognitive Development study, a number of findings have illustrated the impact of neighborhood disadvantage on brain development, structure, and function . Notably, the majority of previous work does not name factors and dynamics related to structural racism. Although a comprehensive and systematic An increasing number of functional magnetic resonance imaging studies are examining neighborhood-level socioeconomic factors. Articles were identified by the authors using a PubMed search which included functional magnetic resonance imaging and at least one neighborhood term . review was outside the scope of this article, we highlight key findings suggesting neighborhood disadvantage is associated with widespread alterations in brain structure and function across the lifespan. Perhaps most well-documented is a significant association between greater neighborhood disadvantage and decreased prefrontal thickness and smaller hippocampal volumes . Several studies have also found neighborhood disadvantage is associated with lower total surface area and subcortical volume . In identifying the neurobiological mechanisms linking neighborhood disadvantage to mental health, these structural changes are compelling targets; thinner prefrontal cortex and smaller hippocampus are associated with PTSD and depression . Even after accounting for individual SEP, neighborhood disadvantage has been linked to delayed structural and functional neurodevelopmental trajectories . Rakesh et al. teased apart the distinct and shared effects of neighborhood disadvantage and household SEP, demonstrating interactive effects between the two different measures on resting-state networks, and further highlighting individual SEP does not fully account for neighborhood effects. Taskbased neuroimaging indicates neighborhood disadvantage helps explain individual differences in affective and cognitive domains . For example, Tomlinson and colleagues demonstrated neighborhood disadvantage was related to neural and behavioral correlates of response inhibition . In adolescents, neighborhood disadvantage was associated with greater amygdala reactivity to ambiguous neutral faces and, in adults, neighborhood disadvantage was related to diminished amygdala threat-related activity . These findings point to environmentally driven changes, suggesting living in disadvantaged neighborhoods elicits activity in various neural processes which may place additional demands on cognitive resources. These resources may be bidirectionally exacerbated by the structural changes evoked by living in a chronically stressful environment. Together, these modifications to brain structure and function may create susceptibility to mental health disorders. Although more empirical work is needed, this theory helps explain why individuals residing in more disadvantaged Webb et al. 10.3389/fnint.2022.958545 neighborhoods report more mental health symptoms . Although the mechanisms by which neighborhood disadvantage impacts brain structure and function may be fundamentally the same across people, not everyone is exposed to this factor at the same rates. Individuals from ethnoracially minoritized groups are disproportionally exposed to neighborhood disadvantage. In all the aforementioned work, researchers were faced with methodological decisions concerning the intersections between race, ethnicity, SEP, and neighborhood disadvantage. Despite strong theoretical support that ethnoracial inequities and socioeconomic inequities are related but not equivalent , the ability to statistically tease apart these effects is challenging. Others have provided recommendations on how to statistically approach measures of ethnoracial and socioeconomic inequities. Given that upstream sociopolitical and structural factors interact with processes at all levels of analysis, it is critical to acknowledge the overlapping patterns of ethnoracial and socioeconomic inequities in studies of neurobiology and related factors, both in their operationalization and conceptualization, to ensure a science that is reproducible, rigorous, and responsible1 . --- Naming structural racism as a root cause Socioeconomic inequities influence health independent of race and ethnicity, however, both individual and neighborhood socioeconomic indicators are ethnoracialized . In this way, the socioeconomic inequities discussed in studies on neighborhood disadvantage and neurobiology are undergirding and intersecting with other forms of oppression, particularly racism . In fact, all of the canonically defined social determinants of health can take form and hold power through structural racism . Certain exposures, such as neighborhood disadvantage, exist as a racialized risk factor because of structural racism . Recent empirical evidence underscores the racialization of neighborhoods: Black Americans in middle SEPs are still more likely to live in disadvantaged neighborhoods compared to white Americans in lower SEPs . Further, for racially minoritized communities, such as Black, Indigenous, Latinx, Asian, and Pacific Islanders, acute stressors coupled with historical stressors and trauma have been linked to long-term adverse health outcomes . Chronically elevated cortisol levels and a dysregulated hypothalamicpituitary-adrenal axis have been found to mediate the effects of racial discrimination on allostatic load and disease for communities of color . Neuroimaging studies on the effects of discrimination and social exclusion have suggested greater activity in areas associated with threat processing and vigilance [e.g., anterior cingulate cortex, amygdala, insula ]. Together, these studies suggest compounded stress effects for members of historically minoritized groups, above and beyond those expected from experiencing neighborhood disadvantage. There have been resounding calls in public health and allied fields for structural racism to be named as the root cause of ethnoracial health disparities and related racialized socioeconomic inequities . Still the majority of human neuroscience research has been reluctant to confront structural racism; infrequently naming structural racism in introductions or discussions. To echo a question raised by Sewell : why not "spell out the connections between health disparities and institutional actions rooted in racism?" The addition of historical and sociological perspectives and the explicit naming of structural racism do not hinder or diminish neuroscience; rather, these perspectives complement, advance, and aptly challenge and hold accountable the current state of the research. --- Situating studies within historical and contemporary context Differential exposure to neighborhood disadvantage is maintained by historical and current ethnoracial residential segregation. Historic redlining is perhaps the most well-known practice contributing to residential segregation . Laws from the 1930's until 1968 , allowed the government-led Homeowners' Loan Corporation to create maps for lending institutions . These maps were used to prevent people of color from residing in specific neighborhoods by limiting bank credit and altering realestate practices . The resulting changes across the entire homebuying process ultimately forced people to buy houses in less "desirable" neighborhoods . In addition, these policies and practices resulted in expansive divestment in redlined neighborhoods and disproportionate investment in predominately white neighborhoods. Redlining may have historic roots, but the legacy in redlined neighborhoods manifests in the lasting neighborhood disadvantage and ultimately in the residents' mental and physical health . For instance, recent research suggests Black and Latinx communities in disadvantaged neighborhoods have an increased likelihood of being exposed to air pollution and toxins, the largest environmental health risk factor in the United States, which can have potentially deleterious effects on physical and mental health . Studies show this disproportionate burden of pollution exposure is partially caused by the overconsumption of goods and services from white populations, producing toxins that are disproportionality inhaled by Black and Latinx communities . Current housing law and practices are also culpable, people of color are still disproportionately denied fair mortgage loans and Black and Latinx communities continue to be under-valued and under-funded . Withholding certain types of investment while also misallocating funds to non-community approved budgets maintains neighborhood disadvantage. Historic and current racist policies and practices force people of color, particularly Black Americans, to disproportionally reside in neighborhood's experiencing socioeconomic disadvantage. Thus, neighborhood advantage is a protective factor that can be-and has been-bestowed upon white people by law. Even the terms "neighborhood advantage" or "neighborhood disadvantage" fundamentally aligns with language used-in theories of Black feminism and intersectionality-to discuss structural racism; white individuals unfairly benefit from these structural advantages and ethnoracially minoritized individuals are harmed. --- Recommendations for radicalizing human neuroscience In our work as neuroscientists, we must recognize that people live within environmental contexts shaped by sociopolitical stratification. When we study neighborhood disadvantage, we are studying an exposure that is relevant to mental health because of its connection to structural racism . In essence, this perspective is a call for the radicalization of human neuroscience work-a necessary paradigm shift that grasps at the roots of the issue rather than dodging them. By remaining silent in our work, we fail to hold the institutions protecting structural racism responsible. When we name structural racism, we direct attention to the laws, processes, and practices which produce and maintain health inequities ). This offers an incredible opportunity to connect research findings to upstream policies , thus identifying appropriate points of intervention and moving away from statements related to broad proxies of SEP. The following recommendations are based upon a diverse array of evidence from previous findings as well as the authors' beliefs. One highly influential framework is the Public Health Critical Race Praxis model proposed by Ford and Airhihenbuwa . This model states racism is a root cause of social stratification and health inequity and highlights the researcher's role in either challenging or perpetuating such hierarchies . If a radical anti-racist framework, such as this model, was applied to neuroscience research then the field could play a larger role in addressing mental health inequities. This will require an unlearning of prior negligent research practices and an ongoing committed effort to learn ethical alternative strategies. While there may be discomfort or defensiveness in interrogating past approaches and holding ourselves accountable in the future, a genuine commitment toward equitable neuroscience research could guide the field forward and further strengthen the interpretative power of studies. --- Report inequities and acknowledge diversity in research samples In general, few studies examining neighborhood disadvantage have methodologically confronted ethnoracial and socioeconomic inequities -though many call for future work to explore these intersections . Recent theoretical work has proposed moving toward an intersectional neuroscience framework. Such a framework would require reporting and addressing between-group differences in socioeconomic measures in order to help contextualize sample and position inequities at the forefront . Rooted in Black feminist pedagogy, Crenshaw's intersectionality framework was originally used to describe the unique experiences of Black women who experience the intersections of racial and gendered oppression. Within the field of neuroscience, this framework can also be applied to research procedures and methods in order to understand the relationships between systems of oppression related to multiple identities and hierarchies of power and privilege . Webb et al. 10.3389/fnint.2022.958545 Even outside of the work on socioeconomic factors, reporting of complete demographic variables is not commonplace . Race and ethnicity are still not frequently reported, despite being "required" by many journals. Ethnoracial differences in study measures can only be observed and interpreted if the data are presented. Therefore, we echo calls to report demographic data that is meaningfully and appropriately disaggregated . The absence of sufficient research on these systemic factors in neurobiology research is also due to the fact that neuroscience research samples are often non-representative of racial and economic diversity within the United States . This is linked to a history of scientific racism. This history includes the exploitations of communities of color for unethical research purposes and the perpetuation of harmful stereotypes rooted in neuroscience research . Therefore, improved and intentional recruitment methods are needed to better understand the neural basis of mental health inequities. Reporting race and ethnicity in neuroscience studies is not enough: proper contextualization of race and ethnicity is essential. In what Nancy Krieger has dubbed "the double-edged sword of data," structural injustice may operate through data use in one of two ways: preventing documentation that structural injustice exists, and using data in problematic ways that further perpetuate oppression of historically minoritized groups . Undoing these structural issues may be remedied by explaining and justifying the conceptualization and operationalization of racialized groups, and also by analyzing racialized groups in relation to available societal inequity variables . Specific to neuroscience research, we advocate for more studies to include environmental and structural factors. Critical to this is contextualizing the racialization of structural and environmental variables. In the absence of this lens, neuroscience studies attempting to avoid the impact of racism when considering social inequity/disadvantage may reinforce notions of biosocial determinist notions of minoritized groups and being "neurobiologically poor" . --- Fund neuroscience work on sociopolitical factors Support for the inclusion of sociopolitical and structural factors in neuroscience needs to occur not only at the level of specification and analysis, but also at the level of funding and epistemic inclusion. Given that many researchers exploring these topics tend to be members of racialized and historically minoritized groups, the lack of funding to pursue these avenues of research has also been associated with the attrition of diverse scholars . This serves as a disadvantage to the field, as these scholars offer pivotal and unique perspectives that could contribute immensely to the field of neuroscience in general. Greater support from large funding entities will help inform our understanding of the effects of socioeconomic distress on neurobiology across diverse populations. --- Explore resilience factors Neuroscience research on neighborhood factors has largely focused on risk modeling, evaluating variables believed to worsen mental health. Institutionalized forms of racial inequities, including neighborhood disadvantage, and community violence, are risk factors dominating the emerging field . Discussions backed by critical race theory being held in other fields including education, law, and psychology, should inform neuroscience work moving forward . A key tenant of critical race theory is that deficit-only perspectives, which minimize the strengths of ethnically and racially minoritized groups/individuals, are harmful . Theoretically, risk-only models are incomplete; and practically, they may further stigmatize marginalized populations. There is ample room and need for resilience modeling in studies on socioeconomic circumstances and neurobiology. In the field of neuroscience, exploring the effects of individual, familial, and community factors that are known to mitigate risk of poor mental health outcomes, such as social support/engagement, civic action, critical consciousness, neighborhood cohesion, and racial-ethnic identity, may be extraordinarily beneficial . --- Engage in community-based participatory and community-engaged research The final recommendation is the most transformative in the context of traditional Western conceptualizations of research. Human neuroscience has relied primarily on "topdown" scientific processes. In this approach, the power rests entirely with the study team and its institutions . Although those researched provide data, they are not consulted to ensure the research question or outcomes align with their experiential knowledge or the community's needs. Even with the best intentions, this Western knowledge production pipeline is inequitable because power is not equally distributed between the researchers and the researched . Community-based participatory research and Community Engaged Research are different approaches to knowledge production which involve various stakeholders collaborating throughout the research process . At its core, CPBR and CEnR hope to build health equity by practicing equity through co-production of knowledge . Psychology has started to answer the calls for communitydriven research and human neuroscience should follow . A first step for research teams is for members to reflect on how their own positionality manifests in their work and in interactions with fellow team members and participants . Just as we cannot isolate participants from the sociopolitical environment, we cannot ignore the intrinsic influences of society on research practices or hide behind a façade of selfproclaimed objectivity . Furthermore, conducting research without developing proper relationships with the community and necessary scientific experts contributes to "health equity tourism, " which results in diluting existing efforts of committed health equity researchers . CPBR and CEnR entail community-building as well as sharing wealth and final products and prioritizing research questions that are important to communities, not researchers. Within this realm, neuroscience researchers can offer pivotal information on causal mechanisms influencing the neurobiology of disadvantaged groups and further establish the basis for innovative intervention and policy work that can improve the conditions of individuals living amongst socioeconomic distress . To make progress in neuroscience community participatory research, funding agencies like the National Institutes of Health must be receptive to funding studies that are likely longer and more expensive. These organizations must also value including community members on research teams, even if these members do not have traditional research training or traditional indicators of research contributions. As researchers, we can advocate for more funding opportunities while also introducing CBPR and CEnR practices into existing studies . --- Conclusion As Angela Davis once noted, "if we are not afraid to adopt a revolutionary stance-if, indeed, we wish to be radical in our quest for change-then we must get to the root of our oppression. After all, radical simply means grasping things at the root" . Her call to action-at the time for Black American women-to participate in grassroot organizing, become involved in political/policy work, and serve as activists in order to fundamentally transform socioeconomic conditions contributing to systemic oppression is still very relevant today. We challenge the neuroscience community to also participate in this quest for systemic change. The burden of progressive change is one we all should bear. The call to address health inequities and build health equity must be met with a radical anti-racist response. As the field of human neuroscience continues to identify biological mechanisms underlying mental health, it must cautiously avoid biological reductionism and essentialism. We encourage all to remain vigilant about discussions of neurobiological effects of sociopolitical variables using only biological terms, and without actually naming oppressive structures . In the context of studies on socioeconomic circumstances, defining factors as an institutionalized form of racial inequity is an initial move toward "grasping at the root" . Additional steps include more thorough reporting of demographics which requires comprehensive evaluations of structural and environmental variables. Ultimately, however, more radical anti-racist steps such as challenging Western knowledge production, embracing community research, and reforming funding agencies' priorities, will lead to transformative change. --- Positionality statement As in all research, it is helpful to understand the authors' positionality and, therefore, their lens on the data. All authors are early-career researchers and shared first authorship. EKW is a United States-born white woman, with expertise in investigating associations between sociopolitical factors and neurobiology in the context of mental health inequities. RD is a southern Black American woman, with expertise in community violence, systemic disadvantage, and racial trauma amongst youth of color. CC-I is a first-generation immigrant cisgender man from Mexico who identifies as Mexican and Latinx, and has expertise in neuroscience research exploring structural and environmental factors and their impact on brain development. All authors worked as a team and had regular discussions to ensure the perspective was guided by their collective cultural knowledge and expertise. This was a collaborative team project that ensured the study was sensitive and appropriate to the context in which it was conducted. --- --- --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
Socioeconomic circumstances are associated with symptoms and diagnostic status of nearly all mental health conditions. Given these robust relationships, neuroscientists have attempted to elucidate how socioeconomic-based adversity "gets under the skin." Historically, this work emphasized individual proxies of socioeconomic position (e.g., income, education), ignoring the effects of broader socioeconomic contexts (e.g., neighborhood socioeconomic disadvantage) which may uniquely contribute to chronic stress. This omission represented a disconnect between neuroscience and other allied fields that have recognized health is undeniably linked to interactions between systems of power and individual characteristics. More recently, neuroscience work has considered how sociopolitical context affects brain structure and function; however, the products of this exciting line of research have lacked critical sociological and historical perspectives. While empirical evidence on this topic is burgeoning, the cultural, ethical, societal, and legal implications of this work have been elusive. Although the mechanisms by which socioeconomic circumstances impact brain structure and function may be similar across people, not everyone is exposed to these factors at similar rates. Individuals from ethnoracially minoritized groups are disproportionally exposed to neighborhood disadvantage. Thus, socioeconomic inequities examined in neuroscience research are undergirding with other forms of oppression, namely structural racism. We utilize a holistic, interdisciplinary approach to interpret findings from neuroscience research and interweave relevant theories from the fields of public health, social sciences, and Black feminist thought. In this perspective piece, we discuss the complex relationship that continues to exist between academic institutions and underserved surrounding communities, acknowledging the areas in which neuroscience research has historically harmed and/or excluded structurally disadvantaged Frontiers in Integrative Neuroscience 01 frontiersin.org Webb et al. 10.3389/fnint.2022.958545 communities. We conclude by envisioning how this work can be used; not just to inform policymakers, but also to engage and partner with communities and shape the future direction of human neuroscience research.
bAckgrOunD Chronic non-communicable diseases are the leading cause of death worldwide, 1 2 and most patients with NCDs live in low/middle-income countries . 3 A study of 23 LMICs revealed that NCDs accounted for 50% of the total disease burden and approximately 80% of mortality in 2005. 4 Unfortunately, the growing threat of NCDs on social and economic development is often underappreciated in LMICs. 3 Empirical evidence shows that high socioeconomic status is inversely correlated with NCDs in industrialised Western countries. 5 However, some studies failed to replicate such findings in developing or transitional countries. 6 The mechanism underlying the role of SES in NCDs is largely unknown. Several SES factors, such as income, education and occupation, probably affect NCDs. 7 Medical insurance is also widely considered as one of the SES indicators, 8 which may be associated with NCDs. 9 Many lifestyle and behavioural risk factors are associated with NCDs [10][11][12] and are closely linked to SES. 13 Lifestyle and behavioural factors have been found to mediate the relationship between SES and self-rated health, 14 which is a strong predictor of NCDs and mortality with SES gradient. 15 16 Self-rated health is negatively associated with depressed mood, which may affect physical health problems, particularly NCDs. 17 The WHO Commission on Social Determinants of Health 13 considers SES as a structural driver impact on people's daily lives and activities, which in turn influence people's health and well-being. Previous studies have often failed to delineate the indirect effects of SES. A few studies --- Socioeconomic status and prevalence of chronic non-communicable diseases in Chinese women: a structural equation modelling approach Hui Yin, 1 Qunhong Wu, 2 Yu Cui, 2 Yanhua Hao, 2 Chaojie Liu, 3 Ye Li, 2 Libo Liang, 2 Limin Wang, 1 Yuchun Tao Open Access used an SES index to incorporate several indicators. 18 Other studies selected a single SES indicator. 19 20 The former approach prevented researchers from further exploring the indirect effects of SES, while the latter skewed the conclusions. Studies using multiple SES indicators have also been reported. 21 22 However, each SES indicator was usually treated as an independent entity. This study adopted a structural equation modelling approach to investigate the associations of SES factors with NCDs, which enabled us to explore associations between multiple variables, as well as the role of a single variable on multiple parameters. Such a study has policy implications for the development of NCDs treatment and intervention programmes because it can improve our understanding of the impact of SES on NCDs. --- MethODs --- Study design Data used for this study were derived from the 2008 National Health Services Survey , which was a nationwide cross-sectional survey organised by the Ministry of Health, China. --- Participants and sampling methods The participants of this study were restricted to the female participants of the 2008 NHSS in China who were aged 15 years and older. The NHSS participants were selected using a multistage stratified random sampling strategy. First, 90 cities/ counties were proportionately and randomly selected and classified into five groups based on 10 socioeconomic indicators. Second, five districts/townships were randomly selected from each of these cities/counties. In the third stage, the participating communities were narrowed down to two neighbourhoods/villages randomly from each district/township of the selected cities/counties. Finally, 60 households were randomly selected from each selected community. The health status of the members of the selected households was recorded in a questionnaire. A total of 66 500 women met the eligibility criteria of this study. The representativeness and quality of data collected in the NHSS were assessed by the National Health Statistical Center. A Myer's index of 3.48 was found, showing no age bias. --- Variables Two health outcomes were calculated in the development of the SEM. ► Number of NCDs: NCDs were defined as a chronic medical condition diagnosed by a physician at least 6 months before the survey. Participants were first asked whether they had experienced one or more NCDs over the past 6 months. If the answer was 'yes', the specific diagnoses were recorded. The main NCDs reported by the participants included cancer, heart disease, cerebrovascular disease, respiratory disease, endocrine disorders and nutrition and metabolic disease. ► Self-reported health: This was measured using a health rating scale ranging from 0 to 100 . The Behavioural risk factors of NCDs measured in the 2008 NHSS included smoking, alcohol consumption, physical activity and preventive medical examination. However, only smoking and physical activity were found to be associated with NCDs. The association between physical activity and NCDs was not linear: moderate physical exercise reduced NCDs, whereas vigorous exercise increased NCDs. Therefore, only smoking was incorporated in the SEM. We tested four measures of smoking in the SEM: smoking as a dichotomous variable , frequency of smoking, volume of cigarette consumption and a latent variable incorporating both frequency and volume of cigarette consumption. The dichotomous measurement of smoking produced the best fit of the model. --- Data collection A questionnaire survey was undertaken through faceto-face interviews, with a response rate of 83%. When a household member was absent, a proxy respondent was considered. In total, <30% of questionnaires were completed by proxy respondents. The interviews were conducted by community health workers with supervision from medical doctors. Training was provided to all of the interviewers and supervisors prior to the survey. Each supervisor was required to visit 5% of the households under his/her supervision to examine the accuracy of the data recorded in the questionnaires. Fourteen questions were repeated during the supervisor visits in the absence of the interviewers. A consistency rate of 91-97% was recorded. --- Open Access Figure 1 Base structural equation modelling model. This is the base model describing the complex relationships between all variables. Here, 'X→Y' means X influenced Y. NCDs, non-communicable diseases. --- Data analysis We used SPSS for the descriptive and regression analyses and AMOS 17 for SEM. We transformed the NCDs variable into dichotomous and performed logistic regression analyses to explore its associations with various SES and behavioural variables . We also performed linear regression analyses considering the number of NCDs conditions as a continuous measurement. The major findings are consistent with the SEM results. To simplify reporting, this article only presents the SEM results. Details about the regression analyses can be found in the online supplementary materials. The SEM analyses were performed to test the relationships between health outcomes, SES and behavioural risk factors. SEM is a statistical method that takes a confirmatory approach to the analysis of a structural theory. 23 It allows analyses of multiple independent variables and multiple dependent variables in one model. 24 SEM has been widely applied in studies related to social psychology and behavioural medicine. It has also been increasingly used in NCDs studies, including identification of effective interventions designed to improve the lives of individuals with disabilities and chronic illness. [25][26][27] This study contained two health outcomes and multiple independent variables . The SEM approach scored over the traditional regression method. In this study, SES was measured by education, individual annual income, occupation and medical insurance. We constructed a latent variable incorporating all of the above SES indicators first. But the results of goodness-of-fit test for the SEM were not acceptable, simply because the directions of impact of the SES indicators on NCDs were different: some were protective factors but others were risk factors. Moreover, these SES indicators influenced each other. Therefore, we used path analysis with observed variables to construct the SEM in which only observed variables were contained. We tested the significance of each factor on NCDs by bootstrap and analysed their effects on NCDs. The robustness of the SEM models was confirmed by logistic regression and linear regression analyses and the adjusted goodness-of-fit index , root mean square error of approximation and root mean square residual . These indices ranged from 0 to 1, with a value ≥0.90 for GFI and AGFI, ≤0.06 for RMSEA and ≤0.08 for RMR indicating a good fit of models. --- results --- Participant profile The majority of participants had completed middle or high school education. Their personal income was distributed evenly across the five ranges. More than 50% of all the participants engaged in manual labour. The low entitlement insurance schemes covered >70% of participants. Less than 3% of participants were smoking at the time of the survey . ncDs and ses, self-reported health Nearly 2.98% of participants suffered from two NCDs, while 0.7% suffered from three or more NCDs. The participants reported an average score of 80.02 out of 100 for perceived overall health. Education, individual annual income, occupation, medical insurance and smoking were associated with NCDs . Higher educational attainment, lower income and absence of smoking were associated with lower prevalence of NCDs . A gradient relationship between self-reported health and NCDs conditions was found: best perceived health in those without NCDs , intermediate health score in those with one NCD and worst perceived health in those with two and three or more NCDs . --- Model fit The base model showed poor model fit, with χ 2 statistics, RMR and RMSEA failing to reach the cut-off criteria. The model fit improved with the addition of mediators. Model D, incorporating all the three mediator hypotheses, produced the best fit . estimates of regression weights in model D Model D was the only tested model that met all of the model fit criteria including the χ 2 statistics. It showed that higher educational attainment and self-reported health were protective factors for NCDs. Smoking, higher income, occupations with less manual labour and higher levels of medical insurance entitlement were risk factors for NCDs. Self-reported health was positively associated with higher educational attainment and higher income, and negatively associated with smoking, occupations with less manual labour and higher levels of medical insurance entitlement . Model D confirmed the significant correlation between smoking and SES, and between SES indicators. Smoking was negatively correlated with educational attainment Open Access and positively correlated with income levels. The income of the participants increased with higher educational attainments. Higher income was also correlated with higher levels of medical insurance entitlement . --- Open Access --- estimates of direct and indirect effects Overall, self-reported health had the greatest total effect on NCDs , followed by education . Education and medical insurance affected NCDs both directly and indirectly . The direct effect of income on NCDs was much greater than its indirect effect. The likelihood of income influencing NCDs via mediators was minimal because its indirect effect was close to zero . The indirect effect of occupation on NCDs was greater than its direct effect. A partial mediator effect was confirmed, which suggested that occupation affected NCDs mainly through mediators such as income and medical insurance . Smoking had a weak effect on NCDs compared with the SES factors . --- DiscussiOn Chinese women are exposed to high levels of SES risk factors for NCDs. This study identified low levels of education, higher income and occupations with less manual labour as major predictors of NCDs. Meanwhile, medical insurance, smoking and self-reported health played a mediating role in the correlations between those SES factors and NCDs. One of the strengths of this study is that we used SEM in data analysis which is a powerful tool for developing complex and sophisticated theoretical models that involve a large number of linear equations. SEM can enhance our understanding of the relationships between multiple factors, such as the relative contributions of SES factors and other factors related to NCDs and the correlations between SES and other factors. Furthermore, data of this study were drawn from a nationwide household survey, one of the largest and most representative data sets currently available in China. However, like all statistical models, SEM presents approximations of reality. The NHSS is a cross-sectional survey, which prevents us from making any causal conclusions in the present study. Unlike most previous studies which examined the relationships between SES and NCDs in high-income countries, this study expands our understanding of such relationships to the contexts of developing and transitional economies. Over the past decades, China experienced rapid economic growth, but with Open Access enormous wealth inequalities. NCDs have started to attract increasing concerns 28 29 as they account for an estimated 80% of deaths and 70% of disability-adjusted life-years lost in China. 30 But there is paucity in studies focusing on Chinese women. Chinese women are more vulnerable to NCDs than men. With the founding of the People's Republic of China, the social status of Chinese women improved under the leadership of Chairman Mao, who advocated gender equality. However, increased workforce participation does not exempt women from their traditional household duties, which leads to serious problems in work-life balance. 31 The 2008 NHSS in China revealed a higher prevalence of many NCDs in Chinese women compared with Chinese men. 32 In addition, the association between SES and NCDs is gender-dependent. For example, hypertension was found to be inversely associated with SES in women, but positively associated with SES in men. 20 21 Moreover, women are more likely to experience socioeconomic difficulties than their male counterparts. 33 This study found that education is the most important SES determinant of NCDs for Chinese women. Education has been widely accepted as a protective SES factor for NCDs. [34][35][36][37][38] The 2002-2004 World Health Survey reported that education was inversely correlated with chronic diseases except for diabetes in LMICs. 37 Cois et al discovered that higher education predicts lower prevalence of hypertension in South Africa. 27 The WHO also reported a link between higher education and lower prevalence of NCDs in China. 38 We found that the effects of education on NCDs involved both direct and indirect effects, and they were mediated by smoking and other SES factors. Indeed, education is a strong predictor of smoking incidence. 39 Educational disparities exist among Chinese women due to unbalanced socioeconomic development, such as those between urban and rural communities. The results of the 2010 population census of China showed that the illiteracy rate of urban women aged 15 years and above was 3.03%, but the illiteracy rate of those living in rural towns and counties was 5.90% and 10.66%, respectively. 40 In this study, we found that women with higher incomes are more likely to suffer from NCDs, similar to findings from other studies in China 38 and other LMICs. 41 However, several studies reached a different conclusion: Cois et al found that higher income predicts lower blood pressure in South Africa 27 ; the 2002-2004 WHS revealed a positive correlation between wealth and NCDs only for diabetes in LMICs. 37 It is important to acknowledge that women in China have been encouraged to participate in the workforce. Despite their increased income, women are still under great pressure to fulfil their traditional duties in the family. The dual pressure renders working women more vulnerable to health problems than men. 32 33 42 43 Meanwhile, higher income has increased the adoption of sedentary lifestyles and excessive calorie intake, imposing a higher risk of NCDs. According to the Chinese National Nutrition and Health Survey in 2002, nearly 300 million Chinese people were overweight or obese. Around 18.6% of Chinese adults manifested abnormal blood lipids. 44 We found that higher levels of medical insurance entitlement are associated with a higher risk of NCDs. This result is consistent with findings of a survey in six middle-income countries including China, which reported a higher prevalence of hypertension in people with mandatory medical insurance compared with those without insurance. 45 However, another study in LMICs revealed a negative association between medical insurance and depression. 46 Medical insurance may influence health through various channels. A lack of medical insurance limits access to preventive services. 47 In China, individuals are not entitled to select from the different insurance schemes available. 32 Social health insurance schemes in China are tied to residency and occupation. The association between medical insurance and NCDs partially reflects occupational and urban-rural disparities. We cannot exclude the possibility of reporting bias either. In this study, NCDs were defined as a diagnostic condition. FMC/MIUE enrollees are more likely to visit doctors and seek hospital services than NCMS/MIUR enrollees. 32 Therefore, they may be more likely to report NCDs. The link between manual labour and lower risk of NCDs demonstrated in this study is consistent with other studies. A systematic review and meta-analysis concluded that farmers and manual labourers have lower risk of hypertension than other workers. 48 This may reflect higher levels of physical activities in these labourers. 48 49 Occupations with limited manual labour are associated with additional NCDs risks. A study conducted in Beijing found that 65.4% of urban employees frequently worked overtime; 47.1% felt 'overloaded' and 29% felt 'exhausted'. 50 The 'White Book on Urban White-collar Health in China' released by Chinese medical professional bodies in 2010 reported that 76% of urban white-collar workers were in a subclinical health condition, with nearly 6 in 10 complaining of fatigue. Clearly, higher income and medical insurance entitlement does not improve individual health automatically. Instead, their NCDs conditions may have been further exacerbated by higher income and medical insurance entitlement. Indeed, we found that the effect of occupation on NCDs is partially mediated by income and medical insurance. Surprisingly, smoking appeared to be a weak predictor of NCDs in this study, probably due to the low smoking rate among the participants and the high level of exposure to passive smoking. 51 Nonetheless, smoking remains one of the top five risk factors threatening women's health in China. China is the world's largest tobacco producer and consumer. The total number of adult smokers in China has exceeded 300 million, including 10 million women. Furthermore, tobacco control is a huge challenge, 52 especially when smoking is combined with socioeconomic factors. 53 Our SEM results demonstrated a positive association between Open Access smoking and income and a negative association between smoking and education. A survey in 48 LMICs showed that wealth is not associated with smoking in Chinese women although this is not the case in 19 countries where richer women are more likely to smoke than the poor. 54 Given the financial sensitivity of tobacco consumption, the tobacco levy introduced in China recently may become an effective instrument for tobacco control. Self-reported health played an important role in the SEM model, the effect of self-reported health on NCDs is profound . Self-reported health is also closely associated with SES and plays a mediating role. These findings are consistent with studies undertaken elsewhere. [55][56][57][58] A study in East Asia reported a positive association between income and self-reported health in Chinese women, but failed to establish an association between occupation and self-reported health in those women. 55 A few researchers believe that self-reported health reflects physiological, mental and social indices. 59 Empirical evidence suggests that self-reported health is a reliable predictor of morbidity and mortality. 1 60 In conclusion, China is facing a serious challenge during the current socioeconomic transition. A complex network of risk factors is associated with NCDs. Socioeconomic disparities associated with the prevalence of NCDs exist among women in China. High educational attainment is associated with a low risk of NCDs. However, the robust economic development has failed to translate into reduced risks of NCDs. Like the cases in many developing countries, high income is associated with an increased risk of NCDs, as well as increased smoking rate. The effect of occupation on NCDs is also mediated by income and economic development. People engaged in less manual labour are more likely to live in urban areas, earn a high income and enjoy high levels of entitlement with medical insurance, which in turn increases their risks of NCDs. The findings of this study have policy implications for establishing responsive intervention strategies targeting NCDs in developing economies. Economic development in many developing countries, such as China, has been accompanied by many social challenges, including the increasing burden of NCDs. It is important to note that women are likely to suffer disproportional risks of NCDs due to gender inequalities in SES. Education may hold the key to mitigating such negative consequences. However, generalisation of the findings to other countries needs to be cautious because the SES of women varies across countries. The SES risk factors for NCDs may be context-dependent. There were several limitations in this study. The status of NCDs was self-reported, and therefore, the findings are subject to recall bias. Although the major findings of the SEM were confirmed by the results of regression analyses, several interaction effects failed to achieve statistical significance in the regression analyses. Finally, the study focused on Chinese women, which did not illustrate the situation of NCDs for the entire Chinese population. Further studies are needed to answer the following questions: Are there differences between men and women in relation to SES risk factors for NCDs? What are the underlining reasons for the gender differences in SES risk factors for NCDs? What difference will education make to reduce gender inequalities in NCDs? --- Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement There are not additional unpublished data from this study.
Objective To investigate the role of socioeconomic status (SES) in chronic non-communicable diseases (NCDs) and offer theoretical evidence for the prevention and control of NCDs. Design Cross-sectional survey and structural equation modelling. setting Nationwide, China. Participants Female participants in the 2008 National Health Services Survey in China who were 15 years and older. results SES factors were associated with the increased risk of NCDs in Chinese women. Education was identified as the most important factor with a protective role (factor loading=-0.115) for NCDs. Income mainly affected NCDs directly, whereas occupation mainly affected NCDs indirectly. The effects of SES on NCDs were more significant than that of smoking. Medical insurance, smoking and self-reported health played a mediating role in the correlations between those SES factors and NCDs. conclusions In China, socioeconomic disparities associated with the prevalence of NCDs exist among women. Educational and social interventions are needed to mitigate their negative consequences on health outcomes in Chinese women.
Introduction Self-tracking, i.e., logging various aspects of daily life using digital technologies, has evolved from an experimental practice to a widespread phenomenon in Western countries . The enabling Self-Tracking-Technology , consisting of various sensors that measure physiological and environmental data, is steadily evolving and can easily be worn on the wrist. However, attributing STT's popularity solely to technological feasibility overlooks the co-productive nature of knowledge, its material manifestations, and the sociocultural surrounding . As Lupton points out, self-tracking is a "social practice, both in terms of the enculturated meanings […] and the social encounters and social institutions that are part of [it]" . Such a conception inspired multifaceted insights into the motivations behind the use and interpretations of STT. Striking in the relevant body of literature are the different viewpoints on the phenomenon, which can be roughly divided into four perspectives. Some authors approach it from a structural perspective , like King and Gerisch , who suggest that STT responds to a demand for self-economisation. Others focus on a personal perspective, placing acting subjects at the centre of the analysis . Noji and Vormbusch , for instance, elaborate on how STT satisfies the desire to maintain an authentic identity despite volatile biographical trajectories. Some interpretations take a nature-centred perspective (e.g., --- Theoretical Framing Van der Loo and van Reijen describe the four perspectives on modernisation and modernity -structure, person, nature, and culture -along four ideal-typical developmental dynamics -differentiation, individualisation, domestication, and rationalisation. Below, these dynamics are shortly outlined in their original form and extended in terms of substance for our purpose. This theoretical corpus originates from a hermeneutic analysis between the empirical material discussed later and the theory used to interpret it. Accordingly, the following represents a pragmatic collection of various modern time diagnoses which can be used to analyse the origins of the promises of self-tracking. It should be noted that the dynamics identified by Van der Loo and Van Reijen only provide an analytical accentuation on the same matter and should not be considered independent developments. --- Structure: Differentiation The differentiation diagnosis describes a structural change in modern societies characterised by the disintegration of a "homogeneous whole" into differentiated and specialised functional spheres with unique institutional characters, rules, and logics . Classic examples are labour division, peaking in the Fordist assembly lines and extending to current global production chains or the differentiation of life domains, such as the separation of "work" and "life" . Through this horizontal differentiation, late-modern subjects synchronously and diachronically belong to many milieus and life contexts, all associated with different normative requirements ). Beyond horizontal differentiation, modernity reflects the historical legacy of vertical differentiation in the form of the stratification of societies in hierarchical super-and subordination between individuals, albeit under different auspices. One of the most influential diagnoses of modern vertical differentiation is still Marx's class theory dealing with the misery of the doubly free wage-labourers. Liberated from the constraints of feudalism and thrown into the forceful process of primitive accumulation, they are ultimately left with nothing but their labour-power, which they must bring to market. Rooted in analysing capitalist commodity circulation and capital movement, Marx's diagnosis lost little actuality . While the trend toward functional differentiation was a modern characteristic until the second half of the 20th century, late-modernity witnessed a break. An example is the increasing reintegration of functions into one person in wage-labour. Pongratz and Voß attribute these changes to the crisis of Fordism. Its rigid, hierarchically structured organisational and control mechanisms of production proved unprofitably scalable in the face of ever-increasing production demands. The response involved flattening hierarchical structures, flexibilising work arrangements, and reuniting functions previously allocated to different individuals. Following this trend, employees are discovered in their subjectivity and no longer seen as mere functional executors. People's versatile skills are incorporated into the company's productive resources while individuals increasingly align their skills towards gainful employment. Consequently, the entreployees emerge as a new ideal-typical figure of late-modernity , managing their labourpower along the market demands but apparently without external control. The poststructuralist theory can illuminate some mechanisms of these new forms of labour. According to Foucault ), social regulation in developed modernity relied on disciplinary principles, as implemented in Fordist work organisations. Latemodernity shifts towards pervasive network-like control, expanding beyond spatial and temporal boundaries . Whereas previously, power was enforced through external disciplinary measures in different institutions, it would now pass into social relations themselves, unfolding through "free-floating" internalised self-control. In these societies of control , power mechanisms are realised by expanding individual agency while maintaining control through accompanying barriers. The resolution of the supposed paradox of control enforced through freedom manifests in the entreployee: They are not subjected to strict working times, places, or means but face control through precarious working conditions or deadline-driven task completion. --- Person: Individualisation The notion of individualisation amalgamates various contemporary diagnoses pointing to the increasing independence of the individual at the expense of social relations. The modern human moved away from traditional collectives of immediate vicinity and integrated themself into numerically more and geographically widespread social units characterised by weaker bonds. As the individuals gain importance, unifying values like solidarity recede into the background . The outcomes of this process are manifold. Rosa , for example, identifies a link with the specific forms of late-modern identity construction. While identity drew from stable social ties and predictable normative biographies in developed modernity, late-modernity brings extensive dissolution, leading to flexible and unpredictable life paths. Following on from this classic individualisation thesis , Rosa sees a new form of situational identity emerging: "[I]t is no longer the case that one is a baker, conservative, or Catholic per se. Instead one is such 'for the moment' and for tendentially shrinking periods […]. One was something different and will be something else" . This activation of situational identities hampers long-term planning. As biographies become diverse and reversible, evaluating decisions for lasting impact becomes harder, making the personal life path appear contingent . While situational identities are not necessarily problematic from an anthropological perspective, they conflict with the late-modern ideal of authenticity . These only contextually retrieved and articulated self-conceptions undermine the experience of an authentic, cross-situational identity core. Identity construction requires cultural self-reflection and self-articulation techniques . Burkart traces the origins of these institutions of self-thematisation from Christian confession to psychotherapy, group therapy, and counselling. Historically, they have evolved from externally guided to self-guided and from moral and cognitive-rational to expressive and performance-oriented approaches. Straub argues that in this evolution, the hegemonic understanding of autonomy changed from a Kantian sense to an individualistic sense. Individualistic autonomy regards detaching individuals from ties and obligations and unrestricted freedom of disposition as the highest aspirations. However, late-modern subjects would still resort to various external counselling practices, thus establishing new dependencies, often mediated by technology. The Auteronomous Subject embeds this contradiction of heteronomous guided self-thematisation under the sign of individualistic autonomy. Fordism proved incompatible with the labour forces' individualisation . Simultaneously, companies shifted from production-centred to capital-market-oriented economics. Dörre links this reorientation to the increasing relevance of the financial sector, fostering the New Economy. In contrast to early theorists of this economic strategy, capital concentration persisted -this time, however, in the hands of the investment sector instead of production. Their generated surplus flows into production through investments driven by future dividends expectations, thereby reversing the relationship between production and profit. Targeted profits determine the work invested instead of vice versa. This ex-ante expectation promotes a competition-based regulatory dispositif in companies : autonomous subunits are formed; hierarchical structures are flattened; responsibilities are pushed "downwards", ultimately to the workers who become the planning and executing force. Control mechanisms such as performance scores and benchmarks emerged, facilitating comparisons between sub-units and individuals. Companies focused on core services, outsourcing secondary production . Organisational actors compete internally and externally, while scores and objectives generate perpetual pressure to perform. This pressure is passed on to the employees through relaxations of labour law, dissolutions of collective agreement regulations, and the dismantling of the welfare state. For Lessenich , the state enacted these measures to activate dormant labour potentials, leading to the so-called Active Society. The Active Society offers individuals autonomy through part-time work, flexible hours, or fixed-term employment, but it also brings growing precariousness . In this insecure socio-economic climate, precarious workforces discipline the core workforce, aiming to avoid becoming labour nomads themselves. The competition-based regulation pushes workers into even more tense antagonistic positions. Their labour-power becomes the commodity traded for potential security. As individuals find themselves exposed to this competition, they search for self-optimisation strategies . Proto-normalistic schemes of action and forms of solidarity are eroding and replaced by systems of comparison. Rosa uses the metaphor of slippery slopes to describe the situation where the performance expectations are constantly being revised upwards: Those not improving automatically fall back. --- Nature: Domestication Domestication, i.e., the cultivation and appropriation of nature to decouple human action boundaries from natural ones, is a characteristic feature of human history . However, specifically modern is the intensification of external nature domestication and the control of inner human nature. In late-modernity, human life appears detached from external natural conditions and is characterised by domesticating the animal within us . This tendency is evident in medical care and can reach as far as consciously manipulating the body or psyche. Domestication is often perceived as emancipation without side effects. However, the detachment of humans from physical and biological forces is accompanied by new dependencies. Besides technologies taming natural forces and other individuals , modern living requires disciplining affective behaviour to guarantee connectivity in an ever-increasing individualised and differentiated society ). As Horkheimer andAdorno point out, mastery over nature is accompanied by alienation from nature, hindering reflection on the controlled object. This also applies to the Self and the body when they become the object of domestication. CC-BY-NC-ND: Creative Commons License, 2023. For example, in her genealogical study on healthcare technology, Riha reports on common exchanges between physicians and patients; physician: "How are you feeling today?"; patient: "I don't know; the lab results aren't back yet." The patient's response here reflects the perception of the body as foreign objectivity requiring external evidence to be comprehended. For Horkheimer andAdorno , this perception makes mastery over nature and alienation a vicious circle. The dialectic of Enlightenment resides in the paradoxical dynamic wherein the exertion of mastery over nature through objectification increases, and not reduces, the power nature exercises over societies and individuals. Nature can be controlled but never wholly overcome; it merely recedes into the background. The subjugation of nature is also self-subjugation since humankind itself is nature. This, in turn, increases self-alienation. The more objectified knowledge is brought into experience, the more the individuals become estranged from themselves, and the more challenging experiences of "being someone", "acting correctly", or "feeling somehow" become, which in turn calls for more objectified knowledge to compensate. As foreign objectivity, the body can be subordinated to the consciousness and thus understood as a deliberately malleable and transformable object . Anders , 21-95) argues that the urge to shape oneself and one's body stems from feeling ashamed compared to human-made technologies considered flawless. More abstractly, Anders diagnosed that the desire for self-transformation results from the perception that in a domesticated, artificially crafted world, the only interfering factors are human beings. This would bring forward self-perceptions as faulty constructions, a particular form of self-reflexive thinking perceiving the human not as biologically predefined but manufactured and consequently transformable creature. This notion underlines that humans' "default construction" is deficient compared to technological achievements. Anders sees the response in human engineers: Individuals experimentally exploring and shaping "amorphous" and "deficient" parts of the Self and body to align them with cultural ideals. Anders emphasises that this exploration aims at transcendence, not self-knowledge. , 21-95). Beyond this general conception of humans as deficient beings, people's characteristics outside the "norm" are seen as flaws or deficits in Western societies, prompting the pursuit of scientific and technological interventions to restore a "normal state" . Nevertheless, an underlying narrative change can be observed, particularly regarding ageing . Van Dyk et al. show how the culturally interpreted deficit "higher age" has undergone a discursive change closely linked to the Active Society. Whereas the dominant dispositif in the 1950s-1970s revolved around "deficiencies" and the "need for help", the current ageing narrative is one of an "active" and "productive" life. However, this shift aims to activate untapped productive forces, not normalise the inevitable. The neoliberal activation dispositif reverses the functional relationship between society and older adults: In return for financial security, people of higher age are encouraged to put their "unused" labour-power into community service, as reflected in the growing call for grandparental childcare, facilitating parents' early return to work. Older adults are being made responsible for not becoming a burden on society and keeping themselves independent. The understanding of impairments as deficits compared to a "norm" persists, and those affected are encouraged to minimise dependence and actively contribute to society. --- Culture: Rationalisation Rationalisation describes the process of ordering and systematising the world to make it more predictable and controllable. In this context, modernity is characterised by employing calculative practices and reasoned justifications with the primary aim of increasing the efficiency and effectiveness of different life domains . However, considering Weber's ) distinction between value and means-end rationality, one could argue that modern societies only differ in the dominant form of rationality employed rather than being inherently more rational than pre-modern ones. While a primacy of value-rationality characterised premodern societies, modern societies exhibit a shift towards means-end rationality. Value-rationality involves deliberations based on norms and moral principles, where actions align with the actor's value system. Means-end rationality considers ends, means, and consequences in decision-making, ensuring that the purpose, methods, and side effects are carefully evaluated to identify suitable solutions. Horkheimer goes a step further with his thesis of modernity being characterised by a primacy of instrumental reason. This form of rational reasoning emphasises evaluating means to achieve ends that are solely subordinated to the value of self-preservation. Deliberation focuses on "how" to achieve something rather than "what" or "why". This does not mean actions are carried out without objectives, but deliberation is narrowed down to achieving them methodically. Ends are defined but rarely reflected upon their sense, making rationality a catalyst for an efficiencydriven, technocratically governed world . In his media-theoretical approach to the concept of instrumental reason, Habermas distinguishes between two areas of life that shape different forms of rationality: the system and the lifeworld . Instrumental reason is the dominant logic of the system, while the lifeworld would favour value-based deliberation mediated by communication oriented toward mutual understanding. The state's and economy's communication runs via administrative power and money, enabling efficient exchanges without the detour of mutual-reflexive understanding, thereby establishing an instrumental logic. In late-modernity, however, Habermas sees a tendency toward instrumental reason slowly colonising the lifeworld . This thesis becomes apparent in the monopolisation of culture by a few companies or the shift from education to labour-oriented training. The primacy of instrumental reason nowadays manifests in the encompassing datafication of everyday life. Houben views data as another communication medium facilitating the spread of instrumental logic in the lifeworld. Mau traces today's ubiquity and power of data to post-Fordist capitalism and its performance-oriented management style. Performance indicators are used to visualise and control progress, embraced by the private sector and public administration. The state becomes a "data manager" using socio-demographic indicators like GDP or birth and death rates to make informed decisions . These indicators are either directly or indirectly derived from quantified circumstances. In this context, quantification means creating numerical representations of an arbitrarily narrow or broadly defined thing by translating some of its qualities into the language of mathematics. This enables us to compare, hierarchise, or calculative transform things, thereby removing some complexity and making phenomena eluding our perception more tangible . Like in other application contexts, data can provide orientation for individuals. Numbers about oneself can be related to and compared with others. However, they are not free of socially negotiated values. According to this thesis of a late-modern Valuation Society , ubiquitous quantitative CC-BY-NC-ND: Creative Commons License, 2023. measurement is not only a description but impacts our worldviews, altering conceptions of value based on instrumental efficiency and accelerating competition through comparisons. It creates new forms of social inequality because the previously incomparable can now be placed in hierarchical order. --- Method We conducted a visual semiotic analysis of TV-commercials as one of the arenas where collective visions of sociotechnical futures are performed, negotiated, and solidified . Even though TV-advertisements lost lots of their relevance for marketing in recent years, they are ideal for this study. Compared to print or audio formats, commercials enable the portrayal of more complex storylines. They address a dispersed, heterogeneous audience and, therefore, more collective experiences in condensed form due to standardised time constraints. The analysis followed the proposal by Gallagher , combining Barthes' myth analysis with film semiotics. We adjusted the method to suit our aim and material. Unlike Gallagher's analysis focussing on contrasting original videos with remixes, we examined the promises embedded in the commercials through the lens of modernisation theory. Each clip underwent analysis using four analytical lenses in hermeneutic cycles. Where the body of theory could not explain a portrayed phenomenon, further literature was consulted and incorporated. The sample comprised four clips selected through theoretical criterion sampling and subsequent maximum variation . We focused on commercials for fitness-trackers and smartwatches. The commercials should portray actors interacting with the STT and have been broadcast within Western Europe for a culturedependent coding analysis . Further, we applied a maximum variation sampling to increase heterogeneity: Both women and men actors should be present . The sample should include commercials from each major manufacturer at the time of sampling to capture not only particular company philosophies. The selected commercials are shown in Table 1. Their content and staging are briefly outlined below. However, watching the commercials to better understand the results is recommended. The links to the videos can be found in the list of sources at the end of the article. --- Commercial 1 A woman in her mid-20s is portrayed in various contexts and activities. First, she is in a forest, exercising on a dirt road in a sporty outfit. These sporting activities are transferred to other contexts, whereby the camera perspective and the character's action remain identical while the scenario changes. E.g., the woman is filmed from the side while running in the forest, followed by a cut and a scene change. She is again seen from the same angle running towards a taxi in a metropolitan setting, wearing casual leisure clothes. The other non-sporting scenes occur at work and a night club . She always wears the fitness-tracker on her right arm but only interacts with it outside the forest scenes. The commercial is layered with a text, spoken by a female voice: "Is your body telling you something, or is it your [STT]? Pushing you to go faster, telling you when to speed up, and when your goal has been reached. Keeping you connected and run your life exactly how you choose." The final sentence is spoken as the protagonist leaves the confines of the forest and runs towards the sea under a clear sky . --- Commercial 2 A cut marks the transition of a mechanical metronome swinging back and forth at 70 bpm with the movement of a man's legs doing floor exercises next to a pool in the early morning. He wears the smartwatch on his arm while the routines of the roughly 30year-old black man are portrayed. He goes running at dawn, passing a noisy construction site. He can be seen at his workplace, wearing an elegant suit and interacting with colleagues. He stands on a golf course, hitting balls into an approaching waft of mist. In the next scene, he is at the gym, pushing himself to the limits before showering. The sound of the shower blends into the pouring rain as he waits under a shelter in the mountains. Because the downpour doesn't cease, he continues running in the rain. The sky clears as he reaches a hilltop overlooking mountain scenery in the dusk. Scene change: The protagonist wears casual evening clothes in a metro station. As he walks towards the exit, he faces a crowd entering the station and sovereignly winds his way through it before disappearing. The end features a voiceover: "Today only comes once. Here's to those who take that as a threat and crush it!" A text insert appears: "beat yesterday". The metronome's ticking is an acoustic constant of the spot; the staging is gloomy and dark . --- Commercial 3 The commercial features five men aged 40-60 in different storylines. Each portrays a specific activity: road cycling, running, gym exercises, dirt running, and triathlon. Despite their different kinds of sports, the storylines are identical: The protagonists prepare professionally, such as shaving their legs , chalking their hands , or applying eye black . The runner puts headphones on and starts tracking his activities on the smartwatch. Throughout the commercial, we see the protagonists slowly moving into the activity with increasing intensity. Towards the end, they reach their goal with their last ounce of strength, smiling at the smartwatch with faces drawn from the effort. An orchestral version of Happy Birthday plays throughout the clip, starting soft and growing as effort increases. The music fades again towards the end as the dirt runner falls at the muddy finish line, with the smartwatch displaying his activity measurements. A text appears: "Some numbers mean more than others" . --- Commercial 4 A man in his thirties sits on a sofa in a baggy outfit, drinking coffee and watching baseball in the morning . Suddenly, a double of himself wearing a less faded shirt and a smartwatch is sitting in the armchair next to the sofa, looking at him with amusement . A notification appears on the STT: "Time to stand!". He immediately obeys, and so does protagonist1. They spot a third doppelganger walking along the street while on the phone and follow him. As the clip progresses, more doubles appear, each more athletic than the last. The walking character is trumped by a fast-walking one , who is trumped by a running one . All of them try to imitate the "most active" one. Protagonist5 stops as he CC-BY-NC-ND: Creative Commons License, 2023. arrives at a beach. Smirking, he looks back at his former Self as they arrive, visibly exhausted. Suddenly, a sixth doppelganger wearing swimwear appears. He rushes across the beach towards the rough ocean, jumps headfirst, and swims. After some initial confusion, the other protagonists try to follow. Protagonist6's head dive causes splashing, briefly obstructing the view before the doubles vanish. In the last scene, the protagonist swims towards the horizon, overlayed by the text: "There's a better you in you" . --- Results Analogous to the theory section, the results are broken down along the four ideal-typic developmental dynamics of modernisation and discussed below. --- STT and Differentiation The analysis from a structural perspective shows both a connection between self-tracking and the late-modern differentiation of social structure into lifestyles, social milieus, and situated roles, and the stratification of social hierarchies. In Commercial 1, the protagonist flexibly navigates multiple life contexts, effortlessly embodying the normative ideal of an energetic sportswoman, ambitious businesswoman, carefree shopper, or exorbitant partygoer. The STT is integrated into each context and charged with the promise to help people to adapt to the norms, values, and interpretive paradigms of the respective milieu, consequently facilitating horizontal mobility. Moreover, technology is presented as an agent of vertical upwards mobility. Commercial 2 portrays a successful, goal-oriented person and a respected member of society, admired at the workplace and living in a luxurious mansion. The fact that the protagonist is black reinforces the point. Despite being exposed to structural discrimination, he could climb the social ladder via self-tracking. The idea is taken up metaphorically in the other commercials by climbing stairs or mountains. Even though not explicitly mentioning it, Commercial 4 discusses acquiring the essential prerequisites for upward mobility. STT would catalyse a transformation from inactivity to dynamism, empowering individuals to set and achieve goals and surpass their limitations. Like Maturo, Moretti and Mori , we identified a connection between STT and wage-labour, manifested through the dispositif of the entrepreneurial self. This link becomes particularly apparent in Commercial 1, where the editing technique equates sports activities with daily life actions. The message conveyed is that athletic success signifies a workout and proxy for professional success. The protagonists independently enhance their performance using the smartwatch without being subjected to institutionalised and direct disciplinary control dictating how to manage their potential or labour-power. From this perspective, they resemble the entreployee , which has internalised its dispositif and its constitutive characteristics of selfinitiative and responsibility and put their lives at the service of wage-labour. However, this internalised control is externalised again by delegating it to the STT. In this role, the technology operates according to a disciplinary principle ). For instance, the smartwatch instructs the protagonist to stand up . The protagonist in Commercial 1 is told that she reached the daily goal of steps and receives a virtual "achievement". Such instructions, but also the tracking of the steps alone, unfold an imperative power. In the first case, it is explicitly formulated; in the second case, it unfolds through a numerical explication and playful rewards. Accordingly, STT is portrayed as a tool to outsource the control people are supposed to exercise over themselves by delegating self-regulation to the smartwatch. --- STTs and Individualisation Commercial 4 plays with the temporal category where the metamorphosis follows a pattern. The currently "most active" protagonist -engrossed in his daily doings -encounters his past Selves, symbolising past captured data. These encounters transform him into a more active version of himself that becomes the new main protagonist. The underlying message is that SSTs would enable individuals to reflect on their past, grasp their status quo, and envision their future by following the trajectory. Reading this narrative through the lens of individualisation, several issues related to lack of orientation become evident . The smartwatch provides directions through self-referential comparison. This comparison counteracts biographical contingency because possible futures can be imagined by tracing developments. Commercial 2 plays with the desire for confidence despite an unclear future. The protagonist hits golf balls directly into an approaching waft of mist but cannot see where his efforts lead. Nevertheless, he is confident as he watches the balls fly into uncertainty. In Commercial 1, the narrator says that the STT would allow users "to run [their] life exactly how [they] choose", thereby promising to reduce contingency and uncertainty. Commercial 1 promises to solve the conflict between fragmented situational identities and the aspiration of authenticity . The portrayal suggests that the protagonist does not play these roles but IS herself in each of them. She IS a believable and authentic athlete, businesswoman, or partygoer and can adopt these identities at will. The smartwatch is portrayed as an overarching device, reconciling these different facets. While gestures, facial expressions, and outfits change, the smartwatch creates a unified, context-independent continuum of data about oneself that can be consulted whenever the question of authenticity emerges. Moreover, STT is offered as a new form of self-thematisation, promising a solution to the crisis of subject construction. This thesis suggests itself because the beneficial consequences of STT are attributed to their reflexive character. Commercial 3 exemplifies this reflexivity as the protagonists push their limits but only derive a sense of satisfaction by examining the numerical explanation of their performance. Self-tracking can be regarded as the logical continuity of the evolution of institutionalised practices of self-thematisation since their use is unassisted and the object of reflection is the body and its performance. Against the backdrop of self-tracking as a seemingly independently accomplishable, performance-oriented, and expressive form of self-thematisation, the portrayal of the commercials' protagonists recalls the ideal-type of the Auteronomous Subject . They support the hypothesis that self-tracking is connected to the idea of realising individualistic autonomy in an externally guided way. The narrator in Commercial 1 provides details about STT's function in this regard: "pushing you to go faster, telling you when to speed up and when your goal has been reached […] to run your life exactly how you choose". SST promises to guide individuals towards autonomy. That the goal is individualistic autonomy is evident in the antagonistic relationships between the protagonist and secondary characters. Similarly, in Commercial 2, the protagonist is portrayed as a lone warrior holding his place against the rest of the world with the help of self-thematisation through the smartwatch. The thesis of self-tracking as a means of self-optimisation is implicitly conveyed in all commercials. However, Commercial 4 stands out as its core narrative is the protagonist's transformation from a sedentary lifestyle to a dynamic, performance-oriented character. The transformation's staging, combined with the slogan "There is a better you in you", suggests the existence of a "bad", "good", and "better" Self, supposedly inferred from individual capabilities and determination. CC-BY-NC-ND: Creative Commons License, 2023. The idea of permanent improvement along performance categories resonates with the emergence of the competition-based regulatory dispositif of the Active Society . Under the finance-based regulatory regime, competition has become an all-encompassing control mechanism impacting individual relationships. Consequently and unsurprisingly, interpersonal comparison and competition occupy ample space in the clips. In Commercial 1, the protagonist's walking direction never aligns with secondary characters', highlighting the absence of shared interests. Commercial 2 depicts the protagonist fighting through a crowd, while Commercial 3 celebrates athletic competition rivalry. STT users are portrayed as winners, envied, or admired. Accordingly, the self-tracking data stand for performance capabilities that must be managed and improved for subjectively perceived safety in competition. STT promises its users competitiveness, counteracting the slippery slopes' downward pull. . Fascinating about this reading is the methodological analogy between capital-market-oriented governance and STT-driven self-optimisation: Both involve setting goals in advance that determine the effort spent and are guided by performance indicators, as showcased by the smartwatch in Commercial 4 notifying the protagonist of falling "behind target pace". As Lessenich notes, the post-Fordist restructuring of production is accompanied by a realignment of the Keynesian welfare state from "'state provision' to self-provision; from public to private responsibility for safety and security, from collective to individual risk management" . This transformation is established as a moral imperative under the narrative of social responsibility . Asserting oneself within competition and the individualisation of social security is presented as a virtue. Those unable to keep up are no longer framed as people needing protection but as a burden for the public. They are encouraged to mobilise, adapt to circumstances, and maintain physical fitness. Here, the dispositif of the Active Society unfolds, equating inactivity with "bad" and activity to "good": "In this world […], the degree of activity, the more or less of individual mobility and movement tends to acquire more relevance than all other social distinctions […]. Essentially all other social distinctions tend to become subsumed under the social meta-distinction between activity or inactivity, mobility versus immobility" . The slogan "there is a better you in you" in Commercial 4 summarises this activation dispositif: there is no room for non-performative action. Even older generations are not excluded from this principle, as shown in Commercial 3 and detailed by Van Dyk et al. . --- STT and Domestication STT unfolds an imperative power on individual action. From the perspective of domestication, this observation can be interpreted as a form of disciplining the Self to keep impulsive and emotionally driven behaviour under control. When the smartwatch points out that one is "behind target pace" , this is a reminder to adapt actions to civilisational demands ). Commercial 1 questions whether it "Is your body telling you something, or […] your [STT]?". The question can be interpreted to mean that it is unclear whether the instructions, feedback, or data originate from the STT or the body. However, the question also addresses the credibility of self-perception and reflects a dualistic mind-body conception. The body is presented as something estranged, a foreign objectivity . Similar to Berg's findings on the marketing narratives of emotion trackers, the commercial reflects the idea that the human body would only be partially fathomable through perception, but not completely graspable by the human mind. The tracker mediates vague signals from the body, makes them accessible to the mind, and facilitates action. As Horkheimer andAdorno explained, the mastery of nature is self-mastery. It reinforces the alienated self-relation and therefore requires new means of mastery, promptly offered by STT. Similarly, Commercial 3 elaborates on the body as a foreign objectivity perceivable through quantitative data. One protagonist finds satisfaction in sports activities exclusively by looking at the fitness tracker. His experience does not run directly through sensory perception. The ideological basis here lies in the dualistic conception of the human as a biological body on the one hand and a conscious Self having power over the former on the other . A remarkable example of this idea is Commercial 2, where the protagonist is compared to a construction site during his workout: He shapes his body according to his will, guided by the STT. Further, the protagonist is equated to a metronome, ticking back and forth with mechanical precision. This comparison is reminiscent of the human engineer , 31-41) exploring and exceeding performance by STT as a prosthesis: The protagonist adjusts to the machine's clocking to function in this culturalised world. He aims to overcome the deficits resulting from comparing cultural achievements with oneself. The idea of supposed deficits to be overcome is also portrayed in Commercial 3, where domesticating the "old" body is a central narrative. The shame of age and self-perception as faulty construction drive the protagonists to adapt their abilities with increasingly sophisticated methods to meet cultural demands. As Van Dyk et al. point out, one of these demands is activation. Even when people reach retirement age, they have not yet fulfilled their service to society. To conclude, STTs are portrayed as domestication instruments, helping users transcend their natural limitations through disciplinary measures to meet cultural demands. --- STT and Rationalisation Analysing the staging of STTs through Weber's axes of rational deliberation , they are primarily portrayed as methodical instruments to rationalise means for diverse goals. These goals are presented as individually selectable and thus convey autonomy and self-determination. De facto, they are reduceable to the same core in each advertisement: Increasing performance and efficiency. This observation resonates with the urge for late-modern rational life planning . In a performance-oriented society, efficiency appears as a guarantor for increasing personal resources, leading to a less troublesome and compulsive life, ultimately fostering more agency. The attractiveness of STT is a promise of objectivity. Since self-tracking ties in with the primacy of numbers , it qualifies as a proven means to lead a rationalised life. After all, STT does nothing else on a purely functional level. It collects data, feeding them back as raw numbers, statistics, or instructions. The fact that individuals follow this rationalisation strategy is explained by Houben's adaption of Habermas' , we see the resemblance between the protagonists and the entreployee as the link between institutional and individual rationalisation. The late-modern subjects adopt institutional rationalisation practices to maximise benefits. In this way, number-driven rationalisation unfolds in the lifeworld. As noted earlier, it is striking how much self-tracking corresponds to the practice of capital-market-based management . In both cases, activation works by setting goals that determine effort. Likewise, control is implemented through scores and benchmarks. It appears that both, the governance of individuals in the context of wage-labour and over themselves, are conducted through the language of key performance indicators. However, the numbers are not presented as factualities but integrated into value systems . Commercial 3 suggests a causal link between self-esteem and achievements. The protagonists assure themselves through their data that their lives are "good". This technologically mediated feeling of happiness is coupled with the slogan "some numbers mean more than others", attributing value to the measured numbers. Likewise, the valuation system hinted at in Commercial 4 equates to a performance-oriented lifestyle, where goodness is expressed through numbers. Interpreting the commercials considering rationalisation was initially challenging due to its pervasive presence but latent discussion. However, this observation reveals the most significant ideological aspect behind self-tracking. As discussed, the clips address some ideal-typical late-modern pathologies. However, when it comes to explaining how STT can counteract them, the commercials remain vague. The supposed cures can ultimately be traced back to a single principle: increasing performance and efficiency through number-based rationalisation. Regardless of origin, nature, or context, rationalising life would make any problem surmountable. Thus, STTs can ultimately be interpreted as material manifestations of instrumental reason , 16-72). Regarding the question of how these technologies can provide relief for late-modern pathologies, only their objective numerical character is pointed out. Like ancient myths, STTs elude any claim to justify their promises: Value is generated through methodical rationality and the resulting increase in performance. --- Discussion and Concluding Remarks The present study delved into an analysis of the use-value promises of self-tracking technology, adopting a holistic approach to offer comprehensive insights into the nature and ideology of narratives behind their use. Guided by the modernisation theory proposed by Van der Loo and Van Reijen , we aimed to transcend the limitations of singular analytical approaches. By synthesising four different analytical perspectives , each encompassing an ideal-typical development dynamic of modernity , we identified an overarching narrative on the supposed purposes and utility of STT. This synthesis goes beyond the mere synopsis of single-perspective results, as the multi-perspective approach gives us an insight into commonalities, differences, and connections between different diagnoses. The resulting findings reiterate what the recently deceased Latour observed: Technology is society made durable . STT appears to address a series of ideal-typical pathologies experienced by late-modern individuals. These pathologies include the loss of a constant normative frame, finding a balance between situational identities and authenticity, the compulsion to perform, the experience of the body as foreign objectivity, the loss of continuity in one's life, and planning uncertainty. Interacting with these individual problems, cultural practices emerged in late-modernity and are reflected in self-tracking. They include the primacy of internalised self-control and discipline, quantification-based forms of economic and bureaucratic governance, performance-oriented and expressive forms of self-thematisation, and the dominance of instrumental reason . Selftracking promises a cure through abstract, cross-contextual feedback linking the past to the present, making futures imaginable, and driving performances to ever-new heights. It describes the Self and the body in numbers and gives implicit and explicit instructions for action, thereby enforcing a disciplinary effect. It enables body-related and performance-oriented self-thematisation alongside economic/bureaucratic rationalisation methods. Above all, however, STTs turn out to be artefacts of instrumental reason that conceptualise the "good life" through efficiency and performance. They propose to achieve this goal by activating the individual and rationalising everyday life. The methodical application of the modernisation theory proved to be an appropriate approach for conducting a holistic examination of self-tracking and its use-value promises. The theoretical corpus, constructed iteratively through hermeneutic analysis and guided by the theory's dimensions, offers an entry point for other researchers to explore self-tracking as a multi-faceted and distinct late-modern phenomenon. To conclude, we identify an ambivalent, if not paradoxical, relationship between the causes of the pathologies to be solved by STT and the cure offered. The causes of the problems addressed in the commercials are closely linked to the late-modern constitution of the prevailing political economy and can be regarded as societal pathologies. Their promises echo Margaret Thatcher's infamous maxim that there would not be such a thing as a society but only individuals looking after themselves first. Self-tracking is offered as an individual solution for collective problems. --- CC-BY-NC-ND: Creative Commons License, 2023. --- About the Authors Max Dorfmann Max Dorfmann is a PhD candidate at the Faculty of Engineering, Free University of Bozen-Bolzano, investigating the possibilities and forms of emancipatory datafication and self-tracking practices in his research. --- María Menéndez-Blanco María Menéndez-Blanco is an Assistant Professor at the Free University of Bozen-Bolzano. Her research focuses on how digital technologies can enable or hinder processes of participation. She is especially interested in how technologies shape and produce forms of discrimination. She has published over 30 peer-reviewed papers in conferences and journals and participates in the organisation of international conferences in the fields of Human-Computer Interaction and Computer-Supported Collaborative Work . --- Antonella De Angeli Antonella De Angeli is Professor of Human-Computer Interaction and chair of the Ethical Committee board at the Free University of Bozen-Bolzano. Her research brings humans to the forefront of development while grounding civic participation and participatory design to promote democratic activism. She holds a PhD in Experimental Psychology from the University of Trieste and has years of industrial and academic experience in the field of Human-Computer Interaction . She has a track record of successful social innovation projects, including the H2020 PieNews and Acanto projects, the MIUR Infanzia Digitales and Citta' Educante, and the FP7 Servface.
Self-tracking describes capturing and analysing the body and life using digital technologies. Its popularity is propelled by the widespread availability of enabling technologies like smartwatches or fitness-trackers. However, given the broad consensus on the co-productive relationship between technologies and social realities, reducing this phenomenon to technological feasibility alone would be inappropriate. This paper explores self-tracking by investigating its enculturated meanings, focusing on Western Europe. For this purpose, we analysed promises behind self-tracking technologies articulated in TV-commercials considering their relation to the late-modern socio-material constitution. The findings suggest that self-tracking addresses several ideal-typical late-modern problems, like the contingency of everyday living. Self-tracking technologies promise to counteract these problems by employing number-based rationalisation strategies. They aim to increase and condense performance capacities and activate the users. Thereby, they turn out to be technologies of an instrumental reason attempting to counter collective issues by optimising the individual.
Background It is estimated that approximately 1 million people worldwide commit suicide annually, and about 60% of these people are from Asian countries [1,2]. The suicide rate in East Asian countries, including South Korea, Japan, and China, is especially high. According to a 2011 report from the World Health Organization's worldwide initiative for the prevention of suicide, Korea ranked third, Japan ranked ninth, and China ranked twenty-fourth out of 105 countries for suicide rate [3]. Despite such compelling figures, suicide is relatively under-researched, and preventive approaches in Asian countries are limited compared to those in European and American countries [4][5][6]. Studies have consistently reported that major depressive disorder is closely related to suicide, suicidal ideation, suicide planning, and suicide attempts and is a significant risk factor for suicide [7,8]. According to previous studies, severe or extended depression [9][10][11][12], advanced age [9], low level of education [13], low level of social support and occupational functioning [9,11], lack of a partner [11,12], current alcohol dependence or substance abuse [9,11,13], negative life events [14], and impulsivity and hostility [10,15,16] have all been reported to be risk factors for suicide attempts in MDD. However, the etiology of MDD is extremely complicated, and the generalization of suicide risk factors is difficult because of differences between studies in the populations studied and the methods employed. In particular, the profiles of risk and protective factors of suicide in Asian countries differ from those of Western countries [10]. Recently, we reported that melancholic features and hostility were associated with suicidal risk in MDD patients from six Asian countries [17]. However, the cited study mainly focused on melancholic features and did not examine important factors such as religion, functional impairment, and poor social support. Interestingly, the prevalence of MDD is lower in East Asian countries than in European and American countries, but suicide rates are higher [18,19]. This suggests that in East Asian countries, various clinical, social, and cultural factors, including religious practices, may be related to suicide in addition to psychiatric disorders such as MDD. Although several studies have provided information on the risk factors for suicide in Asian countries [20][21][22], comprehensive examination on the characteristics of suicide in MDD by multi-country comparative analysis was few. Accordingly, the aim of the present study was to evaluate the sociodemographic and clinical factors related to suicidality in MDD patients from six Asian countries . --- Methods --- Study design and settings This study uses data from the Study on the Aspects of Asian Depression [20]. The participants and method of the present study are the same as those of the Recognizing Ethnic Differences in Depression study [17], a multi-country, cross-sectional, observational study of depression in clinical settings carried out during 2008-2011. Thirteen study sites were established across six Asian countries: China, South Korea, Malaysia, Singapore, Taiwan, and Thailand. The study sites were as follows: Beijing Anding Hospital , Institute of Mental Health , Shanghai Mental Health Center , Samsung Medical Center , Asan Medical Center , Kyungpook National University Hospital , Inha University Hospital , University of Malaya Medical Center , Institute of Mental Health Woodbridge Hospital , Chung Gang Memorial Hospital , McKay Memorial Hospital , Maharaj Nakorn Chiang Mai Hospital , and Prince of Songkla University . All study sites provided psychiatric care for the public or private sector. The study was approved by the Institutional Review Board or Ethics Committee of Asan Medical Center and each respective site. --- --- Assessment Participants completed several self-report questionnaires in the presence of the study coordinator. A face-to-face diagnostic evaluation was then conducted with the site investigator before the participant met with their treating clinician. Data collection was accomplished in a single visit. Suicidality is the likelihood of an individual completing suicide and include suicidal ideation, selfinjurious behavior, suicide attempts, and suicide despite their very different consequences for the patient. In the present study, the term "suicidality" includes the full spectrum of suicidal thoughts and suicidal acts , in keeping with a previous study [23]. Suicidal ideation and behaviors were assessed with the MINI suicidality module [21]. The MINI suicidality module was used to rate the risk of suicide. The module comprises 6 questions about suicidal ideation and behavior: In the past month, did you 1. think you would be better off dead or wish you were dead? , 2. want to harm yourself? , 3. think about suicide? , 4. have a suicide plan? , 5. attempt suicide? . 6. In your life, have you ever made a suicide attempt? . The total number of points is used to classify the current suicide risk on three levels. Scores ranging from 1 to 5 are considered low risk, from 6 to 9 are moderate, and above 10 are high. According to the previous study investigating predictive value of MINI suicidality module, the sensitivity and specificity for suicide attempts after 12 months in patients with moderate-risk MINI sum scores are 0.73 and 0.62, and with high-risk, the MINI sum scores are 0.61 and 0.75 [24]. The positive and negative likelihood ratios for patients with moderate-risk sum scores are 1.9 and 0.44 , respectively, and in patients with high-risk sum scores, they are 2.4 and 0.52 [24]. In this study, depression severity was assessed with the Montgomery-Asberg Depression Rating Scale [25], psychiatric symptoms were assessed with the Global Severity Index [26], fatigue severity was assessed with the Fatigue Severity Scale [27], health-related quality of life was assessed with the 36 item short form health survey [28], disability was assessed with the Sheehan Disability Scale [29], and perceived social support was assessed with the Multidimensional Scale of Perceived Social Support [30]. --- Statistical analysis Participants were classified as low suicidality or high suicidality . Country, religion, age group, sex, marital status, work status, and education were compared across low and high suicidality groups using Pearson's chi-square tests. Age, age at first onset, length of illness, the number of past hospitalizations, MADRS score, GSI score, FSS score, SF-36's total and subscales score, SDS's total and subscales score, and MSPSS's total and subscales scores for low-and high-suicidality groups were compared using two-tailed Student's t-tests for normally distributed variables and Mann-Whitney U-tests for non-normally distributed variables. A stratified logistic regression model was used to investigate predictors of high risk of suicide after controlling for age, sex, years of education, religion, work status, and total MADRS, GSI, FSS, and MSPSS scores. To account for collinearity, the country was not included as an independent variable but as a stratum in the stratified logistic regression model, because its association with other variables such as religion and educational background were high. Independent variables that were analyzed included age, sex, education, religion, work status, history of hospitalization, total MADRS score, GSI of SCL-90-R score, total FSS score, and total MSPSS score. Variables significant on univariate analysis were selected for inclusion in the multivariable model. The null hypothesis was rejected at p < 0.05. The Statistical Package for the Social Sciences software, version 12.0, and SAS were used for all analyses. --- Results A total of 2,023 outpatients were screened for eligibility, and 637 were eligible. Of the 637 outpatients that were eligible, 556 were enrolled in the study. The remaining 81 outpatients were not enrolled for the following reasons: 1) refusal/unwillingness to cooperate ; 2) insufficient patience to be interviewed ; or 3) insufficient time to participate . All participants were compensated for their time. The mean time taken for completion of the self-administered questionnaires was 35.8 min, and for face-to-face interview was 38.1 min. After the interviews, nine participants were excluded from further analysis because they had no MDD. The remaining 547 participants were included in the analysis. 125 were classed as high suicidality and 422 were classed as low suicidality . --- Univariate analysis of sociodemographic and clinical factors There were significant differences in country , religion , sex , work status , and number of hospitalizations between low and high suicidality groups . The highest proportion of patients classed as high suicidality occurred in South Korea , followed by Taiwan , China , and Singapore . There were no significant differences in age, marital status, education, age at first onset, and length of illness between low and high suicidality groups . The high-suicidality group had higher MADRS , GSI , FSS , and SDS scores and lower SF-36 and MSPSS scores than did the lowsuicidality group . --- Multivariate analysis for high suicidality In the logistic regression model religion, work status, MADRS score, and FSS scores were related to high suicidality in MDD patients . Patients who were unemployed 2.50, 95% confidence 3). --- Discussion In the current study, MDD patients were categorized as low or high suicidality according to their score on the MINI suicidality module. Country, religion, sex, work status, depression severity , and the number of past hospitalizations differed between patients with low and high suicidality, but age, marital status, education level, age at first onset of MDD, and length of illness were similar in the two groups. In Malaysia and Thailand, about 10% of MDD patients were classed as high suicidality, whereas in South Korea over 40% of MDD patients were classed as high suicidality. This is consistent with recent epidemiological studies on national suicide rates. The World Health Organization reported that suicide rates in East Asian countries such as South Korea and China were much higher than in Malaysia and Thailand [3], and the prevalence of suicidal behavior has consistently been reported to be high in South Korea [31]. Differences in the suicide rates in Asian countries are related to various factors including climate, religion, financial status, and availability of suicide methods [2]. For instance, South Korea and China experience more drastic weather changes than Thailand or Malaysia, and such changes may contribute to the high suicide rate [32]. Furthermore, the abrupt social changes and economic recession in East Asian countries is likely to have influenced the suicide rate. In the present study, there was a significant relationship between religion and suicidality. Patients who were Hindu or Muslim had a lower suicidality, which was shown to be consistent with previous reports that practicing a religion that forbids suicide, such as Islam, contributes to low suicide rates [2,5]. However, the relationship between religion and suicidality was not significant after stratifying the effect of country; thus, no independent effect of religion on suicidality was evident. There was a higher proportion of females than males in the high suicidality group [33][34][35][36]. Previous studies have revealed higher suicidality in females in Asian countries than in females in countries such as the United States and Australia [33][34][35][36]. This difference could be related to the low socioeconomic status of women, presence of abusive family relationships, and the frequent use of violent suicide methods in Asian countries [33][34][35][36]. Unemployed persons had a 2.5 times higher risk of being in the high suicidality group than employed persons. This indicates a need for social structural efforts to improve employment stability in addition to clinical interventions to lower the suicide rate [37]. The high suicidality group had more severe depression, indicated by higher MADRS scores, than the low suicidality group, and reported a greater number of psychiatric. This corresponds with existing arguments that depression severity and other comorbid conditions are crucial risk factors for suicide [9][10][11][12]18]. Further, perceived social support, assessed using the MSPSS, served as a protective factor for suicidality. According to the present results, patients who perceived a low level of support from family, friends, and significant others had a higher risk of being in the high suicidality group. The importance of social support for suicide prevention has been suggested many times in previous studies [9,11,38], and may be particularly important in the family-oriented Asian culture, where individuals with mental illness have a tendency to be hidden and isolated from society because the stigma of mental illness affects the entire family [39]. Social support should therefore be regarded as an important factor for preventing suicide, and interventions based on social relationships should be expanded in Asian countries. It is interesting that although perceived social support was a protective factor for suicidality, marital status had no significant influence on suicidality. Existing research has shown that marital status or the presence of a partner is not a protective factor for suicide in Asian countries because of the characteristics of the family system in Asian countries [2,40]. Many Asians tend to stay married due to gender inequalities and the negative perception of divorce in Asian society, but stressful martial relationships may worsen depression or increase the suicidality [2,40]. Age [9], education [13], and sex, which have all been found to be risk factors in previous studies, were not significantly related to suicidality in the logistic regression. This inconsistency may be due to the differences in subject characteristics, ethnicities and assessment tools. Age effects could not be detected as they are not linear within the range of age reported. It is possible that suicidality was underestimated due to bias in self-reports, as patients may be embarrassed to admit suicidal behavior and mental problems. Additionally, the samples may not have been representative of each country as a whole, as they comprised clinical samples drawn from tertiary care centers. Recruitment was biased toward MDD patients who used health care institutions, and there may be differences in health care systems among the six countries that participated in the study. Also, This study was crosssectional in design, making it impossible to identify a casual relationship between the identified risk factors and suicidality. Specific risk factors that contributed to the national differences in suicidality risk among MDD patients were not examined. Finally, while impact of country and religion were investigated in the present study, influence of ethnicity was not explored due to homogeneity in terms of ethnicity in most countries. A recent epidemiological study in Malaysia by Maniam et al. showed that suicidal ideation was significantly associated with Indian ethnicity compared with Malays and Chinese [41,42]. Further study about the influence of ethnicity on suicidality may be needed in the clinical as well as the general population. Despite these limitations, the present study revealed that a variety of sociodemographic and clinical factors were associated with high suicidality in MDD patients from six Asian countries. In particular, as with severity of MDD, non-clinical features such as social support from various sources were found to be associated with suicidality. This association with cultural and social factors may explain the limited relationship between MDD rate and suicidality in Asian countries. Further, identification of these factors may facilitate the identification of MDD patients at risk of suicide and the provision of suicide prevention guidelines. --- Conclusion It is well-known that Asian countries have high suicide rates. In addition, the profiles of risk and protective factors of suicide in Asian countries may differ from those of Western countries. However, comprehensive investigation of the characteristics of suicide in the countries was relatively few. This study aimed to examine the sociodemographic and clinical factors associated with suicidality in MDD patients from six Asian countries. The high suicidality group was found to have higher depressive symptoms, general psychopathology and disability scores and lower quality of life and social support scores than the low suicidality group. Moreover, some religion, unemployment and past psychiatric hospitalization were associated with high suicidality in MDD patients in Asian countries. These findings point to the need for a careful evaluation of the risk factors for the suicidality in Asian countries. These factors may facilitate the identification of MDD patients at risk of suicide. --- Disclosure statement Dr Hatim has received the grant and support for travel from Lundbeck for this study; lecture fee from Eli Lilly, Pfizer, Janssen, Sanofi Aventis, Lundbeck and Astra Zeneca. He has served as a advisory board member for Pfizer and Otsuka; grants from Lundbeck and Pfizer; Dr CY Liu has served a advisory board member for Eli Lilly. And she has received grants from Eli Lully and Otsuka; speaker fee, travel expense and payment for development of educational presentation from Astrazeneca, Eli Lilly, Janssen, Otsuka, Pfizer. Dr Uomratn has received the support for travel from Lundbeck for this study. Dr Bautista has received research grant from Singapore national medical research council; travel support from Lundbeck for this study; lecture fee from Merck. Dr. Chan has received research grant from Singapore national medical research council, travel support from Lundbeck. Dr. Tian-mei has --- Competing interests The authors declare that they have no competing interests. ---
Background: East Asian countries have high suicide rates. However, little is known about clinical and sociodemographic factors associated with suicidality in Asian populations. The aim of this study was to evaluate the factors associated with suicidality in patients with major depressive disorder (MDD) from six Asian countries. Methods: The study cohort consisted of 547 outpatients with MDD. Patients presented to study sites in China (n = 114), South Korea (n = 101), Malaysia (n = 90), Singapore (n = 40), Thailand (n = 103), and Taiwan (n = 99). All patients completed the Mini-International Neuropsychiatric Interview (MINI), the Montgomery-Asberg Depression Rating Scale (MADRS), the Global Severity Index(SCL-90R), the Fatigue Severity Scale, the 36-item short-form health survey, the Sheehan Disability Scale, and the Multidimensional Scale of Perceived Social Support (MSPSS). Patients were classified as showing high suicidality if they scored ≥6 on the MINI suicidality module. Multivariate logistic regression analysis was used to examine sociodemographic and clinical factors related to high suicidality. Results: One hundred and twenty-five patients were classed as high suicidality. Unemployed status (adjusted odds ratio [OR] 2.43, p < 0.01), MADRS score (adjusted OR 1.08), p < 0.001, and GSI (SCL-90R) score (adjusted OR 1.06, p < 0.01) were positively related to high suicidality. Hindu (adjusted OR 0.09, p < 0.05) or Muslim (adjusted OR 0.21, p < 0.001) religion and MSPSS score (adjusted OR 0.82, p < 0.05) were protective against high suicidality. Conclusions: A variety of sociodemographic and clinical factors were associated with high suicidality in Asian patients with MDD. These factors may facilitate the identification of MDD patients at risk of suicide.
Introduction Modernity has displayed several divergent aspects in its deformation of social, political, and economic normative codes. With the rising complexity of life resulting from industrialized and urbanized infrastructures, issues like, among others, job disruption, and inflation, hide under the veil of completely shattered social contact and mute conversations. In the 2019 Oscar-winning Joker, Todd Phillips has touched upon several aspects of racism hunting otherized people precisely by their fellow society members. The film delves into the challenging conditions that led to Arthur Fleck's breakthrough against his disadvantaged background and serious mental illness. The 2019 Todd Phillips's Joker is an American psychological thriller set in 1981 Gotham City starring Joaquin Phoenix as the Joker character and Todd Phillips as director and producer. Inspired by the deterioration of the American social body, Phillip exposes the story of the Joker prior to his conversion to the famous supervillain in the Batman series. The film foremost deals with its protagonist Arthur Fleck, a struggling clown with a neurological illness but optimistic enough to dream of being a famed stand-up comedian. In the film, Arthur is invisible to all people except those who are othered like him, the African Americans. They have been portrayed in characters like his social worker, his lover, the woman with her child on the bus, and the administrative assistant clerk at the Arkham state hospital. Indeed, Arthur has been a victim of social-ethical decadence triggering racist behaviors and thus deemed to exist as an invisible man simply because he was different. Little has changed regarding the discourse of social equality and integration; however, what Foucault has in mind is more dramatic within the racism discourse. It follows that racism is now apt to be anchored to a wider group, including those identified as different. This, in fact, is the substituting reason to practice all sorts of discriminating social acts. In this vein, Michel Foucault's lectures Il Faut Défendre La Société, Society Must Be Defended and his Les Anormaux Cours au Collège de France, Abnormal Lectures at the College de France 1974France -1975 argue the narcissistic view of society members to other individuals who do not fit with the social standards. Foucault introduces the concept of racism in Society Must Be Defended as "a way of introducing a break into the domain of life that is under power's control: the break between what we must live and what must die. […] It is a way of separating out the groups that exist within a population" . The point here, however, is not to deny the existence of racial discrimination against African Americans but to prove that the conceptualization of racism is structurally narrow that it cannot detect the infinite intolerance beneath society's behavior, whereby racism against people of color does not accord with numerous incidents in the film. --- Theoretical Framework: Representation Based on theories of cultural studies, The article examines how the Joker represents Americans' resistance to social and cultural hierarchal reality. I will rely on Stuart Hall's representation theory which considers popular culture as a representation of real culture. Hollywood film industry suggests that their products have a representational relation to real life as Hall claims that the mediated popular culture productions have meaning only through a representational system that links cultural meanings with visual images by saying that "It is not that the image has a meaning. It is, as it were, in the relations of looking at the image, which the image constructs for us that that meaning is completed" . However, the filmic approach that I am discussing is not a memetic one but often takes the form of an oppositional movement to the mainstream political and social paradigm. Here, I will draw upon John Fiske's thought that popular culture is a ground for resistance. John Fiske defines films, records, and other products as the "culture of the people, and the people's interests are not those of the industry" . This means they tend to show the reality of people, or at least lay people can identify themselves through the visual characters they see on big screens. For Fiske , popular culture The Representation of Racism and Social Invisibility in Todd Phillips' Joker SAIDI Amira Rihab ALTRALANG Journal Volume 05 Issue 01 / June 2023 [312] has to be, above all, relevant to the immediate social situation of the people. In this regard, I render the Joker a symbol of the overall resistance to masculine norms, creating a completely new model. I will analyze Joker through the cultural and historical film analysis method in line with regarding films as cultural products. I aim to examine how the Joker film represents, challenge, and subvert different social, cultural, or even theoretical assumptions concerning the discourse of racism. In this context, I am not interested in the commercial production of the film or the involvement of the directors as auteurs; I tend to analyze the narratives and the implications of the specific bodily performances in each film to measure how the Joker character is manifesting against the mainstream model of equality and representing all factions that have been victims to this new racism. --- Racism in the 1980s American Society Before beginning with my analysis of the American community, I shall start with conceptualizing two key notions that help our understanding of the American context and the film per se: racism and discrimination. Racism is undeniably a relative notion that alters from one context to another, but there is one thing about it that never changes: it is a social construct. Each society creates its own cultural babble through which anyone whose setting is by its outer circle is considered the other and thus apt to be subject to discrimination. Racial taxonomies such as the African race, Asian race, Caucasian race, and Arab race that focus on geographical ethnic belonging exclude any racial body that does not conform to its norms. Hence, it is mutually performed but still contested in the words of Leonard Harris, in his article "The Concept of Racism: An Essentially Contested Concept?" issued in 1998, where he argues for the multifaceted nature of racism as a concept whereby the racially based discrimination is a social responsibility that is historically inherited by the white supremacy myths and therefore it is engraved in the mainstream social narrative. Instead, Harris preferred to use "racialism" as a substitute for racism that encompasses all ethnic groups, women, classes, aboriginal people … etc., as an indicator of all of us together responsibility in believing in the existence of races and acknowledging the widespread prejudices that categorize social entities . In this regard, there are "racism" instead of a single concept "because all such terms are necessarily indeterminate, visceral, or essentially contested" by the existence of a wide range of cultural differences and beliefs . I may use discrimination and racism interchangeably though they never hold the same connotation; nevertheless, all racist acts execute discriminatory performances. Dr. Fermin Roland Schramm, a teacher and Senior Researcher of Applied Ethics and Bioethics at the National School of Health public of the Oswaldo Cruz Foundation in Rio de Janeiro, Brazil, divided the concept of discrimination into three stages. The first one makes the "discrimination" identical to "distinguishing," which he asserts as this phase it is a normally moral operation that all humans perform not to confuse with other things, "relating to the quality of human interactions, which may be affected by conflicts with consequences, including suffering that is in principle avoidable and so morally open to question" . The second is apt to be anchored with the term "separating," "excluding," and "stigmatizing" individuals or groups and, "particularly, considering them a "different" because of their classification by some characteristic, such as sex, species, ethnicity or social class as is the case with sexism, homophobia, speciesism, racism, and classism" . The third and last one culminates in modernized reconciliations with differences and tolerance with the other. Within this third stage, the terminology of "discrimination" develops a positive connotation since being discriminated against often, Schramm argues, having a "characteristic that is necessary to defining new identities and establishing bonds between 'moral strangers '" . Furthermore, we reach the tacit implication of discrimination in defining racism that holds the patterns of exclusion and stigmatization of groups, although it is a more complex term. In her Race and Racism , Ruth Benedict defines racism as "the dogma that one ethnic group is condemned by nature to congenital superiority" . Michael Banton, on the other hand, claims that the concept of racism is "the doctrine that a man's behavior is determined by stably inherited characters deriving from separate racial stocks having distinctive attributes and usually considered to stand to one another in relations of superiority and inferiority" . Both definitions agree that racism is an ideological dogma that maintains to differentiate one from another by inherited, congenital, and biological features. I intend to use these narratives to establish a counternarrative -Foucault's narratives particularly-that the finest stratification of people based on their cultural, ethnic, and skin color is also socially constructed as it is politically enhanced. Thoroughly shifting to the American context in which the film under discussion takes place, it is worth pointing out that postmodern American culture manifested a multifaceted social crisis that mobilized all states, genders, and even races under the dome of societal and governmental oppression that needed to be revolted against. In 1965, Malcolm X provided lucid accounts that accentuated the allotted social racism between all American factions, We are living today in an era of revolution, and the revolt of the American Negro is part of the rebellion against the oppression and the colonialism which has characterized this era… It is incorrect to classify the revolt of the Negro as simply a racial conflict of black against white or as a purely American problem. Rather, we are today seeing a global rebellion of the oppressed against the oppressor, the exploited against the exploiter. Malcolm X, in light of the aforementioned quote, attributes the persistence of racism and segregation in the United States to unequal power dynamics. Hence, racial discrimination is regularly vindicated post hoc. He claims that the struggle against racism and for the rights of black Americans is a fight against structural injustice and exploitation that affects individuals of all colors and nationalities. This viewpoint is significant because it counters the common assumption that civil rights issues are localized to a single country or ethnic group. It recognizes the universal experiences of oppression and stresses the importance of international cooperation in the struggle against injustice. The 1980s United States of America marked an ambivalent vision toward racial inequities. It becomes evident that by the emergence of capitalist aspirations, the African American struggle has been assuaged and dismantled via the altered focus targeting economic capital, whereby cultural and ethnic ones are neglected African Americans have risen as a political power with an increasing number of elected officials, intellectuals, college or university students, and business owners. Politically, they were elected mayors of the nation's largest cities: Harold Washington in Chicago, David Dinkins in New York, Andrew Young in Atlanta, and Kurt Schmoke in Baltimore . None of this means that racism has come to an end in the U.S. The social identification of "the other" nevertheless incarnates the deeply embedded racist sentiments in the American social arena, even if popular culture has accepted the existence of the black race. This "racial paradox," as Marable described it, resulted in racially motivated harassment, intimidation, and physical abuse where the victims were black subjects . By the same token, Coleman Hughes states his concern that racist behaviors, although lessened, the concept of racism is still prevalent, "It seems as if every reduction in racist behavior is met with a commensurate expansion in our definition of the concept. Thus, racism has become a conserved quantity akin to mass or energy: transformable but irreducible" . His claim underscores the tenacious vector that racism performs in American society, which appears unlikely to have a solution. Thus, it becomes urgent to understand that racism is socially constructed rather than an institutionalized act akin to Stuart Hall's view that: The Representation of Racism and Social Invisibility in Todd Phillips' Joker SAIDI Amira Rihab ALTRALANG Journal Volume 05 Issue 01 / June 2023 [314] Racism is always historically specific. Though it may draw on the cultural traces deposited by previous historical phases, it always takes on specific forms. It arises out of presentnot past-conditions. Its effects are specific to the present organization of society, to the present unfolding of its dynamic political and cultural processes-not simply its repressed past. This implies that the 1980s United States has been turning into a widening gyre that did not only affect the blacks but all othered people, including the whites that received their twisted story of marginalization and racism. Alexis de Tocqueville, in his Democracy in America , calls for serious awareness of the shared responsibility of Americans in performing racism. The hatred that men bear to privilege increases in proportion as privileges become fewer and less considerable so that democratic passions would seem to burn most fiercely just when they have the least fuel ... When all conditions are unequal, no inequality is so great as to offend the eye, whereas the slightest dissimilarity is odious in the midst of general uniformity; the more complete this uniformity is, the more insupportable the sight of such a difference becomes. Here, Foucault has been following the path of almost two centuries of existing study by another French scholar. Foucault argues that "we all have these biological-racist discourses of degeneracy" that make us behave violently toward people we regard as abnormal, new characters, or simply different from our conventional perceptions of the normal . Therefore, power relations qua intra-social degradation of individuals per se implies accountability responsibility between the state and its subjects. --- Foucault's State Racism The genesis of this issue lies in the significance of postmodernism as a theory. Leigh Gilmore offers a definition of postmodernism as "a stable and grounded entity that is an antifoundational practice that nonetheless possesses a foundation" and reduces it to solely a single word; "questioning" . In a similar vein, Stuart Sim claimed the "best" conceptualization of postmodernism as a philosophical movement stands on "skepticism" as a core; "skepticism about authority received wisdom, cultural and political norms and so on" . This antifoundational skepticism was indeed governed by several theories that stand for a purpose. Postmodernism believes in pluralism, the variation of identities, and social and cultural diversity. However, thoroughly, it tolerates differences and newness, accepts minorities, and tries to integrate them into the normal social organism, thereby sustaining the re-consideration of the self that has been previously considered a persona non grata. In the context of this research, poststructuralism "emphasized disparities, irremediable differences, fragmentation, and un-selfsame heterogeneities" . To this end, from a postmodernist point of view, there is an attempt to question racism and how postmodernist scholars, mainly Michel Foucault, claim that racism is ingrained within societies, regardless of African Americans. It is grounded on othering abnormal social characters. Becoming part of the reconceptualization of race and racism, Michel Foucault, in his Society Must Be Defended , argues that the state of "racism" is a social behavior conducted to serve political causes. His narrative stems strictly from his peculiar political philosophy. Mark Kelly asserts that Foucault's philosophy -located in a collection of essays, Power/knowledge -revived Nietzsche's epistemology of knowledge that constrained itself to the effects of power relations as merely political praxis. Therefore, it becomes evident that Foucault's discourse recognizes that "the other race is basically not the race that came from elsewhere or that was, for a time, triumphant or dominant, but that is a race that is permanently, ceaselessly infiltrating the social body, or which is, rather, constantly being re-created in and by the social fabric" . To this point, it is worth heeding the fact that Foucault disregarded the Darwinist white biological supremacy in his lecture. Instead, he rebukes the social organism where indoctrinated humans are responsible for othering some members of the same society as belonging to the other race. For the French philosopher , these new politics emerged from the 19 th century as a "biopolitics of the human race" where there "is no longer an anatomo-politics of the human body" . From a Foucauldian perspective, racism "is a way of separating groups within society" based on what he called the "State Racism," which stands not only for the exclusion of all abnormal social strata counting people with biological disabilities, madmen, and other minorities but for most severely, it encourages internal violence towards them . It intersects with the biopolitical and disciplinary technologies of society. To this end, the notion of racism that I will be referring to in this article transcends the boundaries of skin and thus repudiates the statement "racism" in its old sense. Hence, it is apparent that Foucault's theory which I am referring to as "new racism," gives a prima facie indication pertaining to any genre of discrimination and otherizing behaviors toward minority groups. --- Racism and Clowns In 2009, Chimamanda Ngozi Adichie discussed "The Danger of a Single Story". In her Ted Talk speech, the Nigerian author illuminated the dark shadows we construct upon people's actual stories by identifying them from a "single story" that leads to misconceptions and false interpretations of "the other". I may not generalize this phenomenon, though I assume that a great number of people have fallen into the danger of identifying clowns from a similar single story or even other occult narratives. Evidently, Lucile Charles provided a clear-cut metonymic explanation for the identification of a clown in the following passage: Here then is the reason for the clown's many names and guises and close psychological cousins. He is Devil and Vice, as well as Demon, Goblin, and Knave. He often merges into a Churl, Boor, Rustic, Dupe, Dolt, Booby, Simpleton, Noodle, or Nut. He may function as a Fool, Jester, Buffoon, Comic, or Harlequin or Pierrot with a more romantic touch. He may be a Parasite, Scape-goat, Old Man or Old Woman; or an animal; or he may be the "Fool of Nature," and so complete the cycle back again to the Holy Grail and man's perennial quest. I see no reason for sharp lines of classification: humorous story, folktale, literature, joking relationship, cartoon, clown, all stem from the same basic human need; and the clown ritual function moves among these many forms with their infinite number of variations, taking shape and impetus from particular human beings, in a particular culture, with their particular expression of the universal need. In this definition, Charles highlights the multifaceted nature of clowns and the many roles they embody in human culture. From the demonic and malicious to the naive and simple, the clown figure can symbolize many facets of the human psyche. Humans have a basic desire for laughter which is shown in the many ways in which the clown ritual function is expressed around the world. Indeed, there is no simple definition of what clowns represent. They are attached to the implication of humor pertaining to society of spectacle and idiosyncratic charisma. Still, these identifications are confined to carnivalesque cultural attributes that regard clowns as public entertainers. What is missing is the identification of the human psyche contained within painted bodies. Several scholars classified clowns as "liminal or threshold" figures. . Similarly, Stefanova discussed the clown's paradox of being "described as clever, funny and poetic, but as being neglected and excluded from the real society" . Being a clown in this sense is simply qualified as a persona non grata in the social law and order. Based upon these premises, it is noteworthy to mention that clowns are never to be qualified as professional comedians, while the only recognition they could maintain is being idiosyncratic during their shows as well as in their real lives. Correspondingly, Bakhtin elucidated that they are viewed solely as fools in every orbit they could belong to: Clowns and fools, which often figure in Rabelais' novel, are characteristic of the medieval culture of humor. They were the constant, accredited representatives of the carnival spirit in everyday life out of carnival season. Like Triboulet at the time of Francis I, they were not actors playing their parts on a stage, as did the comic actors of a later period, impersonating Harlequin, Hanswurst, etc., but remained fools and clowns always and wherever they made their appearance. As such, they represented a certain form of life, which was real and ideal at the same time. They stood on the borderline between life and art, in a peculiar midzone as it were; they were neither eccentrics nor dolts, neither were they comic. This quote exemplifies the importance of medieval clowns and fools who embodied the carnival atmosphere into daily life. These people were not only actors; however, they personified a way of life that was both achievable and admirable. Clowns and fools were significant figures in medieval civilization, and this quote demonstrates their enduring relevance in modern times. In Joker, the very first scenes of the film encapsulate clowns' ways of co-existing as society members. At the outset, Arthur Flick performs his job as a billboard-carrying clown when a group of youngsters steal his advertising board and try to make of him. They beat him severely and then abandon him. Their brutality stems from the underlying belief that clowns are helpless creatures. After publicly shaming an innocent guy, the kids in this scene laughed it off, feeling superior to Arthur. In their view, being a clown justify their humiliating actions. Ending this prologue with a lengthy shot of Arthur trembling in fear and sorrow, we hear youngsters laughing as they rush to the end of the street in the distance. Suppose we analyze this scene to find out why they mocked him, putting the blame on their adolescence and whatever juvenile acts it could generate is tangible. Be that as it may, adults who also saw how he was robbed and humiliated in the middle of the day still did not react. In Society Must Be Defended , Foucault deeply probes into the matter and asked; "How, when, and in what way did people begin to imagine that it is a war that functions in power relations, that an uninterrupted conflict undermines peace, and that the civil order is basically an order of battle?" . The answer I would say "not in the near future." Still, even if Foucault was addressing French society, this cannot weaken my argument that the American society portrayed in Joker stirs no difference. Most individuals have been indoctrinated with the belief that the role of the powerful is to set the rules. If the oppressed people are willing to manifest their opposition, they would regard themselves as agents of anarchy. In a Foucauldian sense, these youngsters have the "biological-racist discourses of degeneracy" as a major motive for their racist, humiliating acts . The comments of Thomas Wayne on Joker's first crime on the train summed up the dehumanization of clowns and the emptiness of their existence; he said: What kind of coward would do something that cold-blooded? Someone who hides behind a mask. Someone who is envious of those more fortunate than themselves, yet they're too scared to show their own face. And until those kinds of people change for the better, those of us who made something of our lives will always look at those who haven't as nothing but clowns. . Thomas Wayne's comment draws an obvious parallel between the characteristics of clowns and those of persons who deliberately harm others but refuse to take responsibility for their actions. This signification exceeds the boundaries of a fun maker; it embodied a pejorative connotation that essentially refers to "criminals". If this argument under discussion is defending the side of clowns, Marcelo Beré's vantage point is based upon opposing speculation. Beré bears the undertaking that clowns are responsible for their "misfits in the social context" because they "comprehend the world in different, The Representation of Racism and Social Invisibility in Todd Phillips' Joker SAIDI Amira Rihab ALTRALANG Journal Volume 05 Issue 01 / June 2023 [317] sometimes in the opposite, ways to that which the members of the audience are used to" . Although such stereotypical views encourage the estrangement process towards clowns, in the great majority of cases, I strongly defend the side of clowns that experienced extremely severe physical and emotional harassment that resulted in suicidal thoughts and depression. Regardless of his tribulation with his mental condition, Arthur writes in his journal, "I just hope my death makes more cents than my life" . His desire for attachment and acceptance generated a sense of guilt for existing without the consent of others. The scene described above reflects similar issues inter alia, loneliness, silenced melancholy, and invisibility that embody the state of being under the threat of racist gaze. --- Invisibility and otherness Social theorists have focused on the concept of "othering," which is placing a specific group of people outside the dominant group for a variety of reasons. Patriarchal societies, like the one described by Simone de Beauvoir , view women as the "other" sex because of the way they are positioned in relation to men. Othering people implies excluding their belonging, alienating them from the social group, and subsequentially regarding them as invisible bodies. It involves " the use of stereotypes and representations about the other when meeting her/him and talking about him/her […] for example, ethnocentrism, racism, and xenophobia" . Staszak argues that this division constructs two groups. The person who embodies the norms is thus deemed to be normal and the othered "is defined by its faults, devalued and susceptible to discrimination" . To this point in the discussion, I assume that we already agreed that clowns and mental ills had been socially othered and, therefore, invisible. This end might not be different from Ralph Ellison's Invisible Man , a story of an unnamed African American man who is left alone to ponder the racism and social invisibility it was forced on his character by the Jim Crow segregation laws that denied equal treatment with the white Americans. In this context, the invisible is not an African American but whoever falls in the category of abnormals that can only be seen by their fellow alienated or abnormals. The counternarrative here combines the notion of racism and refutes the classical representation of whiteness in popular culture; the masculinized white figure who is always in a power position. In Joker , the traditional asymmetrical relationship between black people and white people has been altered to companionship rather than master/slave or superior/inferior dichotomies. Perhaps this point calls for further inquiry about racism against whites, which would undoubtedly be leading the European setting rendering the Holocaust and all the antisemitic ideology, but such an examination is outside the scope of my essay, which is an American contextualized study. Joker represents a revealing cinematographic piece of the solidarity that appears between African Americans and Arthur Fleck. They are portrayed in characters like his social worker, his lover, the woman with her child on the bus, the administrative assistant clerk at the Arkham state hospital, and in the last scene with the psychiatrist. Thomas Sowell argues that "the black world was ultimately the only world in which slaves could find emotional fulfillment and close attachments, and to become a pariah there meant personal devastation" . This rapprochement is strictly romanticized beneath Arthur and his love relationship. In fact, she is the only person who laughs at his jokes, identifies him as a viral man, and accepts his love, thereby worth companionship. Based on how she engages with Arthur, one can infer that the director sees them as collective representatives of humanity that are otherwise absent in the characters who inhabit his very small world. Another example is the social worker who did not try to show her privilege over a mentally ill man but tried to show him that he is not the only citizen neglected by the government, saying that "they don't give a shit about people like you, Arthur. And they really don't give a shit about people like me either." . Other characters in the film berate, ridicule, or even assault him when faced with his affliction; Arthur said, "For my whole life, I didn't know if I even really existed. But I do, and people are starting to notice" . There is a continuity in presenting otherness The Representation of Racism and Social Invisibility in Todd Phillips' Joker SAIDI Amira Rihab ALTRALANG Journal Volume 05 Issue 01 / June 2023 [318] concerning state organisms in 1980s U.S. society. Arthur's debate with the talk show Murray unveiled that civilization in the sense of kindness no longer exists. He outrages, Have you seen what it's like out there, Murray? Do you ever actually leave the studio? Everybody just yells and screams at each other. Nobody's civil anymore. Nobody thinks what it's like to be the other guy. Do you think men like Thomas Wayne ever think what it's like to be someone like me? To be somebody but themselves? They don't. They think that we'll just sit there and take it, like good little boys! That we won't be a werewolf and go wild! . In the above quoted passage, Arthur moves from the terrible life of an individual arbitrated by the humiliation of others into the realm of resistance against oppression, even if his reaction means anarchy. That "the civil order is basically an order of battle?" is something his character seems to grasp is significant. From now on, he is part of the rebel group and must endure the racist system that has been imposed on him. --- The social stigmatization of mental illnesses As already mentioned, postmodern racism relates to abnormal social characters who are presupposed to endanger social security. Foucault invented the genealogy of abnormality theory, which is grounded on the principle that the abnormal individual is an "individual to be corrected." . Primarily, abnormality is the new categorization of racism associated with madness, insanity, and psychiatry as social protection. When eliminating race as a criterion of distinction, Reid argues that: An era of biopolitical wars ensues in which populations are constituted via their orientation around racialized norms, enemies are distinguished by their racial differentiation from the norm and wars are waged in which populations are mobilized in defense of racial norms against rival populations defined by a perception of racial abnormality. As a postmodernist, Foucault speaks up for voices that a postmodern society tried to silence. He believes that "madness borrowed its face from the mask of the beast" . In "The Civilization and Madness," he discusses the madmen's position within a society and how they are treated; he believes that: The racism that psychiatry gave birth to in this period is racism against the abnormal, against individuals who, as carriers of a condition, stigmata, or any defect whatsoever, may more or less randomly transmit to their heirs the unpredictable consequences of the evil or rather of the non-normal, that they carry within them. For Foucault, psychiatry is just another form of discrimination against the different. It takes the form of internal racism where the population must be defended against various forms of degeneration . Indeed, madmen are considered to be gentle beasts but under the obligation of social alienation. Joker's Arthur suffers from a "sudden frequent and uncontrollable laughter" as a symptom of his neurological condition, a case that nobody felt empathy towards. In fact, even the black woman with her son on the bus that visibly recognizes him as a person does not accept his mental condition. Nonetheless, the lady thinks that he is bothering her son while he is trying to make him laugh. This scene exemplifies what Michel Foucault called "internal racism", the act of excluding people from our comfort zone grounded on the personal fear of positioning ourselves in danger. Foucault previously termed internal racism operates as a 'biological caesura within a population "between worthy and unworthy life . Ladelle McWhorter argues that within this internal racism, the mentally ill and criminals were not only "bad apples" in the social structure but rather "degenerates." She claims that "[t]heir condition was both mental and moral and physiological and heritable, and it was progressive in that it would likely worsen through the course of their lives and would likely be inherited in a more virulent form in their offspring" . Eventually, the real threat is the social incomprehensiveness and their lack of awareness of how to behave towards people with neurological disorders, which is one of the essences of postmodern racism. Again, in his journal, Arthur writes that "the worst part about having a mental illness is that people expect you to behave as if don't". Arthur accepts his incurable condition, yet he only needs people to understand and agree to take him back to their belonging. In part of the final segments of the film's closure, The Joker expresses his shattered sentiments towards Murray, mocking how society ostracizes him: Joker: I know! How about another joke, Murray? Murray: No, I think we've had enough of your jokes. Joker: What do you get… Murray: I don't think so. Joker: …when you cross a mentally ill loner with a society that abandons him and treats him like trash!? When Arthur repeatedly experiences marginalization and humiliation, comedy is one thing, and his reality is another. He constructs a sense of resilience, eventually realizing that it was not his fault that people marginalized him. The film depicts the dominance of corrupt political men over local social and economic difficulties brought up by cultural materialism. Similarly, Deeksha Yadav highlights the film's core problem: class struggle, which is represented in the city's physical separations. Cinematically, scenes depicting government agencies like hospitals, clinics, and other administrative companies are almost always lit with ominous, low-key lighting that suggests the institutions' dismal state. Thomas Wayne's palace and workplace, however, are screened with brighter lights to emphasize the social divide. As a reaction to this inequality, the Joker revolts against his own society becoming the symbol of revolution against injustice This is seen in the terrifying scene towards the climax of the film, when the Joker is perched atop a police car and everyone in the crowd turns to stare at him. Unfortunately, his epiphany went quite destructive and detrimental. He transforms into a social anarchist who can kill people once under threat. --- Conclusions In association with this counteractive rebel, Robert Bono, in his interview with Michel Foucault in 1983, deduces from the latter's discourse that there is a great distinction between "marginality that has been chosen and marginality that is imposed" . Here, Arthur refuses the marginality imposed on him and makes a new pro-tanto solitary persona. His feeling of homelessness and psychological damage was aggravated when he discovered that even the woman, he considers his mother deceived him also. Though the end of the film represents the Joker franchise in D.C. comics, it makes urgent the call to a full awareness of the danger of marginalizing individuals without their consent. It becomes evident also that racism is a conveniently "internal" trait manipulated by policymakers to decide who can be sidelined. Effectively, the battle against it begins with constructing a collective consciousness that accepts people's differences, thereby protecting them from malevolent comportments. --- Author's biography Amira Rihab SAIDI is a second-year Ph.D. Student at the Doctoral School of Literary and Cultural Studies, Institute of English and American Studies, University of Szeged, Hungary. Her research discusses the filmic representation of the social oppositional movement to the mainstream political and social paradigm, especially within the discourse of masculinity and discrimination.
The discourse of racism that has been per se attached to colored people is now linked to a wider circle, including whites. The essence of my article is to examine the "new racism" communicated by the Joker film by revisiting theories about modern racism. I will mainly rely on Michel Foucault's state racism and internal racism explored in his lectures, Society Must Be Defended (1976) and his Abnormal Lectures at the College de France (1974France ( -1975)). Postmodernism proves that the notion of racism has transcended skin-color differences into distinctive forms of institutionalized discrimination. The fact that this discrimination is governmental, made the discourse of racism more complex. It has even been internalized into the mass population as the new mainstream model. This mainstream model excludes all "abnormals," which could be the mentally ill, disabled people and criminals, or anyone who does not function properly in the capitalist society. The analysis of the film reveals that people with mitigating circumstances like disabled and clowns are otherized and ostracized on the accounts of their difference, thereby entering a pro tanto social invisibility.
Introduction --- P ersistent lack of immunization in certain groups of children is one of the main challenges in immunization campaigns. This problem cannot be sufficiently addressed by strategies directed at the general population, but the management of immunization programmes can be improved through preliminary identification of groups with deficient vaccination coverage. 1,2 Numerous factors have been identified as determinants of deficient immunization rates in infancy and childhood. However, the reasons for these low levels of coverage are not fully understood, and studies to date have not demonstrated which factors are the most important. 3 The effect of some factors depends on country-specific circumstances; for example, on the way of vaccine delivery 4 or on parents' attitudes and beliefs regarding vaccination. [5][6][7][8][9][10][11][12] In the UK and Scandinavian countries, vaccinations are given by trained nurses in specific baby clinics, whereas in other countries like Austria vaccinations are administered only by the general practitioner, paediatrician or the health service. 4 Also beliefs of the public and healthcare professionals regarding vaccine safety play an important role in vaccine uptake. [13][14][15] For example, widespread public concerns about triple vaccination against measles, mumps and rubella in the UK arose during the 1990s and have been described as barriers to measles vaccination uptake. 3,[15][16][17] Attitudes towards vaccination appear to be less important than sociodemographic factors in determining the immunization status. 6,9 Other factors seem to be consistently associated with deficient vaccination rates in most countries. The first group of these factors concerns the social position of the parents, such as the educational status, 9,18-24 family income 7,8,10,[22][23][24] or occupational position; 25 and demographic factors such as the age of the child, 2,23 child's birth order, 8,10 age of the mother, 9,12 geographical mobility, 9 cultural elements 6,8,[19][20][21][22][23][24] and population density. 16,26 A second group of consistently associated factors, which is related to the first group, concerns social support and life circumstances of the family and conditions of child care, such as the number of children in the family, 2,6,9,12,20 family dysfunction, 7 marital status of the mother, 10,22,23 employment status of parents, 8,[19][20][21][22] living environment with respect to urban or rural place of residence, 2,16,21 support in child care and oneparent family status. 6 Although the last group of factors, which can be interpreted as measures that suggest greater demands on family resources, were investigated in several studies, only very few studies included variables on support in child care in their analysis. 6 From a viewpoint of conceptual hierarchical frameworks, 27 child-care variables can be seen as proximate determinants of vaccination status, whereas social and demographic factors are referred to as distal determinants. The latter are most likely to act directly on vaccination status and through a number of inter-related proximate determinants, such as child-care resources. Failure to take hierarchical structures into consideration may lead to underestimation of the effects of distal determinants, i.e. 'over-adjustment' bias. 27 Therefore, for building conceptual model we distinguished three hierarchical levels based on assumptions about the causal interrelationships among all variables. The aim of this study was to assess the effect of both the resources for child care and the parental social status on measles immunization coverage. A further aim was to explore the complex interrelationships between these factors by means of a hierarchical analysis in order to identify important explanatory variables. To this end we surveyed the parents of schoolchildren in Styria, Austria. For hierarchical analysis we used the so-called graphical modelling approach. 28,29 --- Methods The actual vaccination guidelines in Austria 30 recommend two doses of measles-mumps-rubella in the second year of life. A second dose is recommended to all children at least 28 days after the first dose, but preferably before reaching 15 years of age. MMR vaccination is government funded and offered free of charge to all children up to 16 years of age. Paediatricians, general practitioners and public health institutions may administer the vaccine. All mothers receive a so-called 'mother-and-child passport' when pregnant. This includes an inoculation and vaccination record. During the regular post-natal visits with the general practitioner or paediatrician, an appointment for the vaccination is organized. There is no active reminder or recall system, but the second dose of MMR is also administered in primary schools by school doctors in regular catch-up programmes for the 6-to 7-year-old children. --- Study population and data collection A questionnaire survey was conducted in Styria, a county of Austria of about 1.2 million inhabitants. Randomly selected schoolchildren of the first, fourth and seventh grade and their parents were the target sample of this cross-sectional study. We used a stratified cluster sample design consisting of 176 randomly selected classrooms of primary schools and high schools as primary sampling units. A list of all classrooms was obtained from the Styrian school authority . We stratified the sample according to the grade of the child and residence in order to obtain a sufficient number of cases in each stratum. All teachers of the selected children received 30 questionnaires and a letter of invitation to participate in the vaccination study by the internal post service of the Styrian school authority. All children in a selected classroom were included in the sample. The size of the clusters varied between 6 and 25 subjects. We received questionnaires from the parents of 3037 children , representing a 7.3% sample of the 41 417 schoolchildren of the same grades in Styria. The distribution and collection of the questionnaires by means of schoolteachers ensured the comparatively high response rate of 79.8% . We excluded all cases with missing values on at least one of the variables. Therefore, a total of 2386 subjects have been included in the ultimate data analyses. To check for non-response bias, our analysis sample was compared with the sample of excluded subjects . The two groups did not differ in measles vaccination rates and in demographic determinants. --- Definition of variables Parents were asked to report the number of vaccinations using MMR, MM or measles vaccine received by their child to date. The dependent variable for data analysis was the binary variable 'vaccination status' defined as '1' if at least one MMR, MM or measles vaccination was received, and '0' otherwise. To increase the reliability of the answers, the parents were additionally requested to report the exact date each vaccination was administered. Therefore, we assume that the parents were forced to use the inoculation and vaccination record as reference document. It has been shown 31 that validity of parental recall depends on the number of shots of the vaccination and that recall is high for single dose vaccinations as is the MMR vaccination. According to our hierarchical model, two groups of independent variables were distinguished. The first group exclusively contained variables that cannot be determined by the other variables of the study and was referred to as sociodemographic status. This group included two demographic variables of the child and two variables that were considered to be stable characteristics of parental social position not influenced by current life circumstances or variables of the second hierarchical level. These variables were as follows: the grade of the child , the child's gender, the highest educational level of the father and the mother, categorized as compulsory education , apprenticeship , high school , university . We did not include variables on ethnicity or immigration status in our study because of the high ethnic homogeneity of the Styrian population . 32 Regarding barriers influencing access to health care providers, we did not consider child's health insurance status because $100% of the children are covered by the Austrian health insurance programme. The second group of independent variables, referred to as child-care resources, described current conditions of child care, including factors of the social micro-environment and living conditions. As these variables potentially depend on first-level variables and may influence the vaccination coverage, they formed the second hierarchical level of our model. This included the number of children in the family , current employment status of parents , one parent family , support in child care at home by friends, relatives, neighbours or nursery teachers and place of residence coded as urban or rural . Although the number of children in the family can be judged as a demographic factor, we decided not to include it in the first level. The number of children is potentially influenced by factors of the second level and, moreover, it is an indication of differences in the conditions for child care. --- Statistical analyses Bivariate statistical analyses were performed first using SPSS Statistics for Windows . Group differences were assessed with the Pearson's chi-square test and using the g-coefficient 33 as association measure for ordered qualitative variables. To incorporate our conceptual hierarchical model into the analysis, we performed a second analysis utilizing recursive graphical models. Graphical models are a multivariate statistical method particularly useful for explaining and describing direct and indirect interrelationships between several variables. They can be seen as a generalization of regression models in the sense that-with necessary modelbased restrictions-each variable in the model is simultaneously evaluated as a dependent variable. Then, potential causal pathways and intervening variables can be modelled. Graphical models were introduced by Darroch et al. 28 and Lauritzen. 29 Edwards 34 published a detailed and readable introduction to applications. Graphical models Determinants of vaccination coverage in schoolchildren are visualized by an independence graph, where vertices represent variables and lines or arrows symbolize undirected or directed conditional relationships, i.e. significant associations between two variables. We used the software package DIGRAM 35 for hierarchical analysis, which is designed for recursive graphical models with qualitatively scaled variables. The partial g-coefficient was used in the hierarchical analysis for the description of conditional relationships between each pair of variables and was included here for comparison. Corresponding to our conceptual hierarchical model, we set up for the DIGRAM analysis a three-level graphical model with the third level as the dependent variable vaccination status, the second level as the resources for child-care variables and the first level as the socio-demographic status variables. The first step of the DIGRAM analysis consisted of a pre-analysis of the saturated model. This is a model that assumes that there are connections between all variables as in the case of backward elimination regression analysis. Using the screening procedure of DIGRAM, all non-significant conditional relationships with level of significance of !0.15 were excluded from the model. The resulting model was further analysed using the backward selection procedure of DIGRAM with a chosen level of significance of 0.05. --- Results --- Bivariate analysis The mean age of the children was 6.5 years in the first grade, 9.6 years in the fourth grade and 13.1 years in the seventh grade, thus corresponding to an age difference between grades of $3 years. The frequency distributions of the different variables within each category are listed in table 1. The complete administration dates of the reported vaccinations were only missing in 4.1% of the vaccinated children. Table 1 displays the unadjusted measles vaccination rates for each category of all investigated factors. Lower vaccination coverage was significantly associated with higher grade, a lower level of paternal and maternal education, a higher number of children in the family, no support in child care and a rural place of residence. No significant association with coverage was found for child's gender, the employment status of parents and for single mothers or fathers. --- Hierarchical analysis Figure 1 presents the final model of the graphical backward elimination analysis visualized by the independence graph, where arrows indicate directed associations between different levels, and lines show relations of variables within the same level. Table 2 gives the g-correlation coefficients and the P-values for all statistically significant associations seen in the independence graph. The sign of the g-coefficients indicates the direction of the relationship. Three factors showed a significant direct effect on vaccination status: the grade , the number of children in the family and the educational level of the father . Concerning the resources for child care, none of them showed a direct relation to the vaccination rate with the exception of the number of children variable. There was no direct association of the level of parental education with the number of children, but there were direct associations with both the parental employment status and the urban/rural place of residence, which in turn were related to the number of children . Thus, the level of the education of the father was directly associated with the vaccination status of the child, whereas indirectly by family size. Hence, it seems to be of focal interest concerning the socio-demographic factors. Concerning the resources for child care, the factor of focal interest was the number of children. The other assessed child-care variables were associated only indirectly with the vaccination coverage in multivariate analysis . Since the level of education of the father and grade are assumed not to be causally influenced by resources for child care, solely the number of children may act as an intervening factor between child-care resources and vaccination status. The results suggest that the number of children were directly associated with an urban place of residence , being a one-parent family and employment of both parents . Therefore, these factors might indirectly correlate with the likelihood of vaccination, but seemed to be of no direct relevance for a family of fixed size. --- Discussion The major objective of our study was to identify factors that may explain deficiencies in measles vaccination coverage of schoolchildren and to provide information about their interrelationships. We focused on the role of child-care resources and their interrelationship with socio-demographic factors. Bivariate analyses showed significant associations for grade, education of the father and the mother, number of children in the family, support in child care and place of residence. No associations were found for child's gender, parental employment status and one-parent family. Vaccination coverage of the children of the first and fourth grade is comparable with other European countries , 36 whereas coverage in seventh-grade children is lower. The higher rates in the first and fourth grade can be attributed to a second vaccination at school entry introduced by the recent measles vaccination programme. In the graphical modelling procedure, numerous plausible and well-documented relationships appeared within and between the first two levels. A closer look at the interrelationships between the different levels reveals that a low educational level of the father is a main distal explanatory variable related directly and through intermediate variables to the vaccination status of the child. Another previous study 24 analysed father's and mother's educational level separately and found, similar to our results, a stronger correlation of vaccination rates with the father's than with the mother's educational level. A low educational level of the father and mother is associated with a lower employment of the parents, with a lower likelihood of support in child care and with living in a rural region. These resources are in turn related to a higher number of children in the family, a variable consistently related to a deficiency in vaccination coverage in our study and in previous investigations. 2,6,9,12,20 The vaccination coverage is not directly related to urban vs. rural place, but through other factors like the family size or the parental educational status. This result suggests that in comparing the rural with the urban conditions, there may be no other place-specific determinants of relevance than the factors included in the model. This seems to be in accordance with the situation in Austria where the ways of vaccination delivery and uptake are very similar in urban and rural areas. The indirect association of the resources for child care may indicate potential indirect causal effects of these resources on the vaccination coverage. In this case, a low parental educational status may be directly, and mediated by resources for child care, associated with deficient coverage. A look at the independence graph of our model enables us to discern the function of intervening variables and their dependencies on distal socio-demographic factors. The main mediating variable was the number of children in the family; it was the only investigated child-care factor directly associated with the vaccination coverage. Child-care factors directly associated with this mediating variable were living as oneparent family, urban/rural place of residence and parental employment status. The latter two variables were associated with the educational status of both parents. Therefore, a low level of education of the father and the mother is an indirect predictor of a low coverage through their correlation with deficient resources for child care. Comparing the g-coefficient between vaccination status and education of the father of 0.20 with the partial g-coefficient from graphical analysis of 0.16 illustrates the problem of underestimating the effect of distal predictors as described by Victora et al. 27 Two conclusions are to be made. First, the overall effect of the educational status must be evaluated without improper adjustment for proximate factors , i.e. through bivariate analysis and not by regression analysis. Second, an assessment of proximate factors associated with deficient vaccination coverage in children, without adjusting for the social status of the parents, may lead to biased results. As an overall conclusion, this study indicates that parental social status measured by the level of education is a major predictor of measles vaccination coverage in schoolchildren. The size of the family seems to be an important predictor of the life circumstances of the family concerning child care. Our results suggest that, for a given number of children in the family, resources for child care are not associated with the measles vaccination status of the child. Thus, our results add to the existing literature. As in previous studies, we were not able to explain through which pathways the number of children is related to a deficient vaccination coverage. Vaccination programmes should therefore mainly focus on families with many children or parents of low educational level and not on the whole population. Approved methods include mass media campaigns directed towards target populations and notification of non-vaccinated children to local health professionals and parents. 37 Furthermore, the results suggest that the targets of primary prevention should include the improvement of the general educational level of the whole population. With respect to the applied methodology, it can be stated that the evaluation through hierarchical graphical modelling allowed a refined constitution, analysis and interpretation of the data compared to regression analysis. The graphical models method offers the decisive advantage of pointing out the associations of predictors within the same hierarchical level on the one hand, and lending support to the theorybased and hypothesized pathways on the other. The major drawback of graphical modelling is the lack of a unique and interpretable effect measure, such as the odds ratio or relative risk. --- Conflict of interest: None declared. --- Key points The effect of both the resources for child care and the parental social status on measles immunization coverage in Austrian schoolchildren was investigated. The highest strength of association with deficient vaccination coverage was found for the number of children in the family. A low educational level of the father and the mother and a high grade were also independently related to low coverage. The results indicate that the only independent factor associated with child care is the number of children in the family, whereas the other investigated resources for child care are only indirectly associated with vaccination coverage. Vaccination programmes should mainly focus on families with many children or parents of low educational level and not on the whole population.
Background: Numerous socio-economic and demographic factors have been identified as being associated with low vaccination coverage in children. However, the complex interrelation between these factors is not fully understood. We focused our study on the less well-established associations of familial resources for child care with vaccination coverage and their interrelationship with sociodemographic factors. Methods: This cross-sectional study (n = 2386) focuses on parental social status and on resources for child care as determinants of measles vaccination coverage of schoolchildren aged 6-13 years in Styria, Austria. In order to reveal the relationships among these factors, an analysis based on a conceptual hierarchical model was performed. The so-called graphical modelling approach was used for the multivariate analysis of the hierarchically structured determinants. Results: The findings indicate that vaccination coverage is directly associated with a large number of children in the family (P < 0.0001) and directly as well as indirectly associated with a low level of education of the father (P < 0.001). All other included child-care resources are only indirectly associated with a low coverage, whereby the number of children acts as main mediating factor. Conclusions: The results suggest that vaccination programmes should mainly focus on families with many children or parents of low educational level and not on the whole population.
Background HIV remains one of the public health challenges of our time; responsible for morbidity and mortality across different age group [1]. It is estimated that there are about 37,900,000 people living with HIV globally [2]. Of these, 36.2 million were adults and 1.7 million were children less than 15 years old [2]. According to the Joint United Nations Programme on HIV/AIDS , an estimated 1.7 million individuals worldwide became newly infected with HIV in 2018; 160,000 new infections among children ages 0-14 [3]. In 2018, only 79% of people with HIV globally knew their HIV status [2]. Although new HIV infections have declined by an estimated 16%, from 2.1 million in 2010 to 1.7 million in 2018, around 770,000 deaths were recorded from AIDSrelated illnesses worldwide in 2018 [2]. Globally, mother-to-child transmission of HIV accounts for more than 90% of all new paediatric HIV infections and may occur during pregnancy, labor, delivery or breastfeeding [4]. The risk of mother to child transmission during pregnancy ranges from 20 to 45%. However, with specific interventions, this risk can be reduced to less than 2% [5]. Without testing and treatment, 50% of HIV-positive infants die by age 2 years and 75% by age 5 years. For children who became infected through vertical transmission or other means such as unsafe blood transfusions, the best protection against dying from AIDS is HIV testing and diagnosis followed by prompt ARV treatment [6]. About 1.9 million Nigerians are living with HIV, giving a national prevalence of 1.4% [7]. This makes Nigeria the country with the second highest burden of HIV globally [8]. The Nigeria HIV/AIDS Indicator and Impact survey in 2018 estimated the prevalence among children aged 0-14 years to be 0.2%. HIV prevalence varied by zone across Nigeria, with the highest in South-South Zone and Akwa-Ibom state recording the highest in the country-5.5% [7]. Reports from the Nigeria HIV/ AIDS Indicator and Impact Survey also showed that only 40% of women who gave birth since January 1, 2015 knew their HIV status despite the investment in safe and cost effective prevention of mother to child transmission interventions for HIV in the country [7]. This limits the identification of HIV exposed children and proportion of those accessing HIV testing services which is the basis for timely initiation of antiretroviral therapy [9]. As a PMTCT priority state [10], the identification of correlates of testing behaviour is extremely important. This can be used to improve HIV testing campaigns by refining messages that target individuals at highest risk of infection [11]. Both individual and institutional factors have been found to affect uptake of testing services in sub Saharan Africa [12]. Individual factors were mainly related to parents or guardians of the children and included demographic and socioeconomic factors [12][13][14][15]. The institutional factors were mainly inadequate human resources, supplies and weak infrastructure [12,16]. Given that there is still no cure for HIV, prevention continues to be a main thrust of HIV control efforts. HIV testing and counselling is central to these efforts. It presents valuable opportunities to identify new infections, increase awareness of HIV status, and addresses the HIV related health disparities [17]. In addition, it alleviates anxiety, promotes behavioural change and facilitates early referral to care and support, including access to antiretroviral drug therapy [18]. By implementing focused, high-impact prevention and accelerated HIV testing, it is expected that 95% of people living with HIV should know their HIV status by 2030 [19]. This would mark the end of the AIDS epidemic as a public health threat and reduce drastically the number of people acquiring new HIV infection [20][21][22]. Many studies have assessed knowledge, perception and factors influencing HIV testing among adult but there is a dearth of studies on the correlates of factors influencing testing amongst children and young adolescents. This will help inform public health policy to develop a more holistically targeted and context specific HIV testing program for children and young adolescents as an important HIV prevention and treatment strategy. Such knowledge will also help combat the factors that may mitigate uptake of testing services [23]. Ending the AIDS epidemic is an opportunity to lay the foundation for a healthier world for future generations [24]. It will be impossible to end the epidemic without bringing HIV treatment to all who need it. Testing helps identify those to be treated. This study therefore aims to determine the correlates of HIV testing amongst children and young adolescents in Akwa-Ibom State, Nigeria using data collected as part of the Akwa-Ibom AIDS indicator survey . --- Methods --- Survey methodology This study is based on a secondary data analysis from the Akwa-Ibom AIDS Indicator Survey . The AKAIS was a population-based cross-sectional survey amongst 15,609 household residents across all 31 local government areas of Akwa-Ibom state between April and June 2017. The AKAIS sample was a stratified multi-stage sample with two stages. In the first stage, 226 enumeration areas were selected using probability proportional to size . The AKAIS used enumeration areas and population information defined by the 2006 population census. In the second stage of sampling, a fixed number of households were sampled from each selected EA using systematic sampling. This was done following a household mapping and enumeration exercise to update the EA sampling weights. The Centers for Disease Control questionnaires to guide HIV Impact Assessment surveys was adapted for the AKAIS. Parental consent was sought from the parent or guardian of children 0-14 years. In addition, assent was sought from children aged 10-14 years whose parent or guardian had consented to their participation. Individual records were uniquely identified using barcode identification numbers. Questions pertaining to children 0 months-14 years were embedded in the individual questionnaire for adults, and data was provided by their parent or guardian . A separate questionnaire for adolescents ages 10-14 was administered to eligible participants in this age group. Information was collected on demographic characteristics; HIV knowledge, attitudes, and risk perception; HIV testing; Adolescents aged 12-14 years were asked additional questions about sexual activity . --- Study measures The sample for this study were all 4037 children and adolescents aged 0-14 years whose caregivers answered the question "ever tested for HIV?" Data for 2167 caregivers was analyzed. Uptake of HIV testing amongst children and adolescent was the outcome variable for this study. It was assessed by asking caregiver of children and adolescent the question: 'has child ever tested for HIV?' It was measured as a categorical variable and assessed as a binary outcomeyes and no. Child characteristics included age, sex, child enrolled in school, location, child ever received blood transfusion while caregiver-related characteristics analyzed were age, sex, educational status, comprehensive knowledge of HIV and caregiver ever tested for HIV. Caregivers comprehensive knowledge of HIV was assessed, and this was defined as: i) knowing that someone can protect himself/herself from HIV by using condom during sexual intercourse, ii) knowing that a healthy-looking person can have HIV, iii) knowing that HIV can be transmitted by having unprotected sex with an HIV-infected person, iv) knowing that there are medicines that people with HIV can take to help them live longer, and v) knowing that HIV can be transmitted by sharing of sharp objects. A binary outcome of "1" was designated if all questions were answered correctly and "0" if any of the questions were answered incorrectly. --- Statistical analysis Statistical analysis was performed using Stata/SE 16.0, and the 'svy' command was used to account for the complex survey design including clustering. The analysis was done adjusting for sampling weights, hence, weighted estimates were reported. A subpopulation analysis for children and adolescent was applied. Descriptive statistics were used to provide characteristics of the study population. Design adjusted Chi square test of association was conducted to explore the empirical relationship between uptake of HIV testing and selected independent variables which include child's age, sex, location, enrolment in school, ever transfused with blood, caregiver's age, caregiver's sex, caregiver's highest level of education, comprehensive knowledge of HIV and caregiver ever tested for HIV. Design adjusted simple and multiple logistic regressions were used to estimate crude and adjusted odds ratio. Variables significant in the bivariate analysis were included in the multivariable logistic regression model. However, insignificant variables that are of contextual importance such as child's enrollment in school, sex of the caregiver, and sex of the child were included in the multivariable logistic regression model. The goodness of fit of the model was assessed using the Hosmer-Lemeshow test. Odds ratio were used to assess the strength of association between the independent factors and uptake of HIV testing. P-values less than 0.05 were considered statistically significant. --- Results --- Socio-demographic characteristics of participants The mean age of the children was 6.20 yrs. ± 3.91. Less than a quarter of them were young adolescents between the ages of 10-14 years while 76.7% were children less than 10 years. Approximately equal numbers were male and female . 31.8% of the respondents lived in urban areas. A quarter of the children were not enrolled in school. Majority of children have never received blood transfusion . Only 14.2% of children and young adolescents reported ever testing for HIV. Majority of the participants have never been tested. --- Caregiver/parent factors Caregiver/parent factors consisted of the following variables: age, sex, highest level of education, comprehensive knowledge of HIV and ever tested for HIV. The mean age of the caregivers/parents was 37.46 ± 11.62. 64.4% were females. Approximately one-tenth had no form of education; two-fifths had secondary education while only 10.4% had a tertiary education. Less than a third of the caregivers had a comprehensive knowledge of HIV while slightly above half had ever been tested for HIV . --- Association between selected factors and uptake of HIV testing Table 2 presents the bivariate analysis of selected independent variables and uptake of HIV testing. On average, 15.0% of children less than 10 years and 10.4% of adolescents between 10 and 14 years had ever been tested for HIV . An increase in the age of the children was associated with a reduction in uptake of HIV testing. Only 12.2% of rural dwellers had been tested as compared to 18.3% of urban dwellers . A higher proportion of children who have ever received blood transfusion have ever been tested for HIV compared to those who had never received blood transfusion . --- Association between caregiver factors and uptake of HIV testing As shown in Table 2, 12.8, 16.4, 16.3, 8.7% of children whose caregivers were 15-24 years, 25-34 years, 35-44 years, ≥45 years, respectively, had ever tested for HIV . Increasing age of caregiver was associated with a reduction in uptake of HIV testing among the children. Uptake of HIV testing was only slightly higher amongst children whose caregivers were females as compared to males . Prior HIV testing was highest among caregivers with tertiary education compared to those without education , primary , and secondary education . An increase in caregiver's educational status was associated with an increase in uptake of HIV testing among the participants. A higher proportion of children whose caregivers have comprehensive knowledge of HIV had ever tested for HIV than children whose caregivers have no comprehensive knowledge of HIV . --- Multivariate analysis of correlates of uptake of HIV testing Table 2 presents information on the multivariable logistic regression of correlates of uptake of HIV testing. The multivariable logistic regression revealed previous history of transfusion, caregiver's highest level of education and caregiver ever tested for HIV as significant factors associated with uptake of HIV testing in children and young adolescents. Children with a previous history of blood transfusion were 5.3 times more likely to have been tested after adjusting for other factors. Those whose caregivers' highest level of education was primary education were 2.2 times more likely to have been tested compared to those with no education. This was slightly higher for those whose caregivers' highest level of education was tertiary . An increase in caregiver's educational status was associated Measure of the strength of association between selected factors and uptake of HIV testing with higher odds of uptake of HIV testing among the children. Children whose caregivers had been tested for HIV were 8.3 times more likely to have been tested compared to those whose caregivers have never been tested . --- Discussion Only 14.2% of a total 4037 children and young adolescents who participated in this study have ever been tested for HIV. This is slightly lower compared with result from a population-based survey done in Kenya where 16.4% of children less than 15 years had ever tested for HIV [25]. Contrary to result from this study, more children in a facility based study done in Cameroon had previously been tested for HIV [26]. In achieving population-level viral suppression and epidemic control in a state with the highest prevalence of HIV in Nigeria, a widespread coverage through targeted HIV testing is essential [20]. Although testing for HIV is the cornerstone of ultimate prevention, most children and young adolescents are still unaware of their status [27]. Testing uptake is higher among adults compared to children as evidenced from the 2017 Multiple Indicators Cluster survey [28]. There is evidence that HIV negative women seroconvert during the breast feeding period [29,30]. These children are usually not considered exposed because their mothers were negative during antenatal resulting in missed opportunities. While there is evidence of mother to child transmission due to the high prevalence of HIV in Akwa-Ibom state [7], testing of exposed children has not been optimal [2]. Risky sexual behavior among young adolescents also make them vulnerable to HIV infection. This low prevalence of testing uptake can be attributed to less autonomy and decisionmaking power including health-seeking behaviour associated with this age group. It further buttresses the lack of evidence for HIV Testing Service approaches targeted towards children and adolescents [31]. The study sample is made up of 50.8% male and 49.2% females . The ratio of males to females is about 1:1 which indicates that approximately, equal number of males and females were involved in the study. This is similar to the census held in Nigeria in 2006 [32]. The study was done on children and young adolescent from 0 to 14 years because Akwa-Ibom has the highest prevalence of HIV in Nigeria [7] with an increased risk of mother-to-child transmission. Also, the increase in risky behaviour associated with adolescents globally [33], makes it necessary to determine if they have ever been tested as well as understanding the correlates of testing uptake among them. The mean age of the children and adolescents was 6.20 ± 3.91. Result showed approximately 15.0% of children less than 10 years and only 10.4% of adolescents aged 10-14 years have ever been tested for HIV. Although adolescents are at a greater risk of being infected, the testing rate is still low. In a similar study to assess the prevalence and correlates of HIV testing in Uganda, it was discovered that only 10.7% of adolescents aged 10-14 years had ever been tested for HIV [15]. Results of this study showed sex and age of the children and adolescents were not significantly associated with uptake of HIV testing. This was found to be consistent with a study from Western Kenya which showed the sex and age of a child had no significant association with acceptance of HIV testing [34]. Despite the higher percentage of children and young adolescent in urban area ever testing for HIV, location was not significantly associated with uptake of HIV testing in this study. This was inconsistent with a facility based cross-sectional study in Tanzania where mothers or caregivers who resided in the urban region were four times more likely to send their children for HIV test compared to their counterparts in the rural communities [35]. The result from this study may be due to the presence of primary health care facilities and community health care workers in both rural and urban parts of Akwa-Ibom. Although more children enrolled in school had been tested for HIV, this was not significant in the study. However, Ssebunya et al. reported that adolescents with higher educational status were more likely to have been tested for HIV [15]. The study by Ssebunya et al. included adolescents up to 19 years who needed no parental consent before getting tested for HIV [15]. Although less common, transfusion of contaminated blood remains a very important cause of paediatric HIV infection in developing countries [36]. However, due to the screening of donated blood for evidence of HIV infection, the risk of acquiring HIV from blood transfusions is extremely low. From the result, 46.1% of children and young adolescents who have been transfused have been tested. This was found to be a significant correlate of uptake of HIV testing. Those who have been transfused were 5.3 times more likely to have been tested. This can be explained with the fact that blood recipients are also screened for HIV before being transfused due to medico-legal reasons. Age as well as the sex of the caregiver were not significant in the multiple logistic regression model. Contrary to the result of this study, Makau, Okwara & Oyore in 2015 discovered that caregiver's age was a significant predictor of testing uptake [37]. A similar study done in Cameroon identified the sex of a caregiver as a significant correlate as women were more likely to take their children for HIV testing services [26]. This could be due to the study being facility-based considering the feminization of uptake of HIV services in Cameroon [26,38]. The association between caregivers' educational level and testing uptake is consistent with other studies. Children of caregivers with no education had less chance to have been tested compared to children of caregivers with tertiary education. Higher education attainment was a strong correlate of testing uptake, which is in accordance with positive role of education in promoting general health status [16]. This finding suggests that educated caregivers may be more knowledgeable about the risk of HIV and understand the benefits of testing for HIV in both children and young adolescents. This finding reaffirms the results from Zambia showing that caregivers with higher level of education were likely to be more knowledgeable about mother-to-child transmission [39] and will be more willing to present their children for testing. In a cross sectional facility based study done in Tanzania, higher chances to access testing services were observed among children whose caregivers had attained high education level [40]. Caregivers' knowledge of HIV was not significant in the uptake of HIV testing in children and young adolescents. This might be due to the high level of stigmatization associated with HIV. Despite the adequate knowledge of HIV, caregivers might prefer to remain unaware of the status of their children for fear of stigmatization if the result turns out positive. Contrary to results from this study, Makau et al. reported in their study on factors influencing uptake of EID among mothers in Kenya that good maternal knowledge is a significant predictor of EID uptake [37]. Samson et al. also discovered a significant association as having adequate knowledge was associated with an increase in uptake of HIV testing [35]. Results indicates that 23.5% of children whose caregivers knew their status have been tested for HIV. This was significant as those who had been previously tested were 8.3 times more likely to have been tested for HIV compared to those who have not. Vreeman et al. in 2010 stated that children were less likely to be tested for HIV if their mother/caregiver had an unknown HIV status [34]. According to Bwana et al., a mother's ignorance of her status is a significant predictor of missed opportunity to access HIV testing services [40]. Children of HIV infected mothers/caregiver were more likely to get tested due to the knowledge they have acquired about HIV and the willingness to prevent their children from contracting the virus. The limitation of AKAIS is mainly the cross-sectional nature of the survey, which only provides a snapshot of the HIV prevalence in Akwa Ibom state. The generalizability of the study findings is limited to the region under study. The study only assessed information on children and young adolescents aged 0-14 years, therefore, the findings may not be generalizable to adolescents above 14 years. However, the large sample size of 4037 among children aged 0-14 years helps provide important insights about HIV testing in children. Collecting accurate information about sensitive topics is difficult, particularly topics pertaining to HIV testing. Respondents may have provided socially desirable answers rather than provide answers that accurately reflect their experiences. Respondents may not readily disclose whether they have previously tested for HIV, for fear of being identified as HIV positive. --- Conclusion This study has demonstrated that uptake of HIV testing among children and young adolescents in Akwa-Ibom state is low. There is a need for HIV interventions to be targeted towards this age group. Scaling up HIV testing services through provider initiated testing and counseling and family index testing will help increase the uptake of testing services among children and young adolescents. Addressing the knowledge gap amongst caregivers especially in rural areas is crucial towards improving the effectiveness of HIV interventions. Community-based health education and testing will also increase access to HIV services. This will have a positive effect towards ending the AIDS epidemic by 2030. --- --- --- Abbreviations --- --- --- Competing interests The authors declare that they have no competing interests. ---
Background: In order to end the AIDS epidemic by 2030, there is a need to significantly reduce the rate of new infection among children and young adolescents. Identifying the correlates of testing behaviour is necessary to improve HIV testing campaigns by refining messages that target individuals in this age group. The objective of this study was to determine the correlates of HIV testing among children and young adolescents in Akwa-Ibom, Nigeria. Methods: The outcome was a secondary data analysis of the 2017 Akwa-Ibom AIDS Indicator Survey. Data of 4037 children and young adolescents aged 0-14 years was assessed in this study. Analysis was done using STATA version 16. Chi-squared test and logistic regression models were used to measure association and its strength between uptake of HIV testing and some independent variables (child/caregiver's age, sex, educational status, child's location, caregiver's knowledge of HIV and caregiver ever tested for HIV) at 5% significance level. Results: Result showed that only 14.2% of the children and young adolescents have been tested for HIV. Previous history of blood transfusion (AOR = 5.33, 95%C.I = 2.60-10.92, P = < 0.001), caregiver's level of education (AOR = 2.67, 95%C.I = 1.30-5.51, P = 0.008) and caregiver ever tested for HIV (AOR = 8.31, 95%C.I = 5.67-12.19, P = < 0.001) were significantly associated with uptake of HIV testing.This study concludes that a large proportion of children and young adolescents in Akwa-Ibom state have never been tested for HIV. There is a need for HIV testing interventions to be targeted towards this age groups and their parents/guardian. Addressing the knowledge gap amongst caregivers especially in rural areas is crucial towards improving the effectiveness of HIV testing interventions.
INTRODUCTION Talking about violence in Indonesia, especially violence against children and women, is no secret. Violence is one of the high-rate cases in Indonesia that needs special attention from the government. Violence is an act of hurting someone that can endanger that person and even threaten their life. Violence often occurs against children and women. Children are the future generation of the nation as well as the successors of the ideals of the nation's struggle who need education, guidance, protection, maintenance, and good direction to be able to grow and develop in the life of society, nation, and state. In this case, full support is needed from both outside and inside. Especially from within or internal factors. Internal factors are usually related to family conditions, especially the attention given by parents. Attention from parents can be in the form of prevention or freedom of children in carrying out activities to develop children's motor skills during growth. In this case, parents play an active role in supporting and supervising the growth of the child. External factors are influenced by the environment both from the surrounding environment, the educational environment, and the child's play environment. Children must be protected, loved, and given special attention so as not to commit criminal behavior or acts of violence by individuals, groups, parents, or playmates either directly or indirectly. In essence, children are unable or unable to protect themselves from various forms of actions that can cause physical, mental, mindset, and child development losses. Therefore, special and intense protection efforts are needed for children. So children need help from others to protect themselves from various situations and conditions that might endanger or even threaten their lives . However, not all children get full affection from their parents. There are often cases of children being abused by their parents. Usually, this violence occurs due to broken home family conditions, insufficient economic conditions, disharmony that occurs in the family, and so on. These conditions will certainly affect and hinder the growth of the child who should receive treatment like other children in general. Violence is very close to the life and development of children. How could it not be, several cases found that children at an early age have been introduced to acts of violence. The forms of violence they experience include verbal, physical, and sexual violence. Children's experiences related to acts of violence can be known through the forms of violence they feel, the perpetrators who commit acts of violence, the place where violence occurs, and the causes of violence. The perpetrators of violence that occur in the family are usually the closest people who should have the obligation to protect these children, such as grandparents, fathers, mothers, siblings, and their immediate environment . Not only do cases of violence occur to children but there are also many cases of violence against women. Cases of violence against women usually occur within the family. However, many women receive acts of violence such as harassment, rape, and murder, and even women who are traded by certain individuals. In this case, the author will discuss cases of violence against women that occur within the family. Domestic violence against women is usually committed by the husband to his wife. Problems that arise in the family trigger conflicts that lead to violence. A family is a unit consisting of the head of the family, the wife, and the children. Each family member has their role both in rights and obligations that must be carried out. Each family member is obliged to respect each other, give what is the right of each family member, and provide full affection both in the form of attention and protection. The provision of these rights and obligations can be in the form of alimony by the husband to his wife and children, carrying out the full obligations carried out by the wife to her husband and children, the obedient and submissive attitude of children to their parents, and taking care of each other's family members. Family is the most intense scope for a person to adapt. Various ways are done to improve communication and harmony in the household to become a perfect family and prevent conflicts or problems that occur in the family. However, the fact is that no family does not have problems, either caused by internal factors or external factors. Internal factors usually arise from the family itself, such as lack of harmony in the household, lack of attention, lack of communication, high egoism, neglect of family members, economic problems, and so on. Meanwhile, external factors usually arise from third parties. Third parties here are not always related to the existence of a third person who is considered to damage the family relationship, but can also be due to the influence of environmental factors themselves. Internal and external factors that arise in the family can encourage division and even violence as a result of problems that occur in the family. Violence that occurs can cause psychological and physical impacts for victims of violence. Not only does it have an impact on victims, but perpetrators who commit acts of violence can be charged with articles that will be subject to sanctions and penalties. According to Morris, ; Phillips & Vandenbroek, domestic violence is a crime committed in the context of an intimate relationship. The relationship is characterized by violence accompanied by power and coercion directed at a person and aimed at controlling that person. The number of cases of violence increases every year. In 2008, 1,736 cases of child abuse were reported to the National Commission on Child Protection. This number increased in 2009 to 1,998 cases of violence against children. Approximately 62.7 percent of the 1,998 cases involved sexual violence. In 2010 there were 453 cases of fission violence, of which 646 were sexual violence 550 were psychological violence, 69 cases of kidnapping, and 30 cases of pornography. Based on the 2017 Annual Compass Notes of Komnas Perempuan, cases of violence that occurred in Indonesia in 2016 from 358 Religious Courts recorded 245,548 cases of violence, and data from 233 cases of violence in 34 provinces recorded 13,602 cases handled by Service Provision Partners. From the total data, the result was 259,150 cases of violence against women that occurred in Indonesia. According to Yohana Yembise, Minister of Women's Empowerment and Child Protection, in March 2018 there were around 1,900 reports of violence against children in Indonesia. The number of cases of violence that occur so that there is a need for public awareness to report criminals. The complex problems of violence in the household both affect children and women, so Law No. 23/2004 on the Elimination of Domestic Violence was formed and passed. However, the implementation of the Law has not been as it should be. As a result, the rights of victims have not been fulfilled because not all law enforcement officers applying this law consider the relationship between husband and wife and parents and children . According to violence that takes place and occurs repeatedly is a situation that hurts and pressures someone who experiences it. Every act that causes pressure, threats, or criminal acts is included in social problems. Conditions like this are very painful and tend to cause pressures that result in the disruption of a person's psychological problems as a result of the violence that occurs. An example of a bad portrait of violence is the murder committed by a mother to her three children that occurred in Gianyar, Denpasar, Bali. Ni Luh Putu Septyan Permadi is a 33-yearold teacher, the perpetrator of the murder victim as well and the mother of her three children who were killed by her on February 21, 2018. The motive for this murder was because she could no longer bear the burden of her complicated household problems. The perpetrator of the murder of his own three biological children has been declared a suspect. According to the confession, the suspect murdered by smothering the nose and mouth of his children one by one until they were lifeless. Not only that, after ensuring that his three children were lifeless, the suspect then intended to commit suicide by drinking the insect poison he had prepared and slashing his arms and neck. However, the action was discovered by the family, and were immediately rushed to the hospital in a critical condition and were successfully saved . From these cases, special protection is needed, namely Law Number 23 of 2002 concerning Child Protection which is realized through the relationship between institutions and laws and regulations . Victims of criminal acts who suffer from domestic violence experience short-term and long-term suffering that requires protection from the government related to the human rights of victims and recovery efforts. This recovery aims to improve the victim's condition due to acts of violence and immediately carry out activities as usual. Recovery must be carried out intensely with proper handling so that victims will feel comfortable during the recovery process both by medical and non-medical services . --- METHOD The writing of this article uses a sociological juridical legal research method, where the author compares various cases that occur related to domestic violence with the laws and regulations in force in Indonesia. The cases that the author analyzes come from various media both print and online. In this research, the author does not go directly to the field to see the facts but collects them from various sources of cases. Expert opinions that the author obtained to support various arguments in this research were obtained from previous studies and books related to the issues raised by the author. --- RESULTS AND DISCUSSION Domestic Violence Domestic violence can be referred to as spousal abuse which includes verbal, physical emotional, and sexual abuse of a person. The victim of this violence is considered to be the victim of domestic violence. However, domestic violence can happen to any gender, race, age, and sexual orientation. Domestic violence causes several negative impacts such as long-term physical and mental health problems to the victims who are generally children and women. Physical injuries that may occur are cuts, bruises, concussions, fractures, internal injuries, organ damage, loss of hearing and vision, arthritis, permanent disability, and other injuries from sharp objects . Domestic violence is considered a global problem with serious health concerns. The UN defines domestic violence, especially against women, as any act or omission of gender-based violence that results, or is likely to result, in physical, psychological, mental, or other harm to women, including threats such as coercion, and arbitrary deprivation of rights. The existence of these acts of violence is motivated by several risk factors for perpetrators of violence against women, First, there is a temperamental attitude as a result of prolonged and deep thinking about a problem that can trigger anger. Anger accompanied by physical action increases and raises the risk of violence. Second, substance or drug abuse. There is a link between violent acts and drug use where the perpetrators of these violent acts usually consume illegal substances that can cause loss of consciousness. Third, witnessing family violence. Usually, violent behavior by the perpetrator is due to past experiences of seeing or even experiencing acts of violence. Fourth, gender ideology. This relates to the point of view that men are heads of families who have the strength and power to maintain dominance . Children are a mandate and a gift from God in they have inherent dignity from birth as whole human beings. Children have the right to be protected and cherished. Every child who is born must get what is their right without the child asking for it. Through Presidential Decree No. 36 of 1990 on the general principles of child protection, namely nondiscrimination, the best interests of the child, survival and growth and development, and respect for child participation. The government issued regulations on human rights in Law No. 39/1999 on Human Rights, which contains regulations on children's rights through several articles. Children's rights are an integral part of human rights that contain elements containing the formulation of universal principles and provisions of legal norms governing children's rights . Children's experiences of violence that occurs in the family are usually through the five senses, namely "witnessing". However, in this case, children who see violence through the five senses fail to capture patterns of behavior that should not be done in front of them, which in this case will create deep memories. Children may not always understand and observe domestic violence related to sexual abuse but they are still aware that abuse occurs . Child sexual abuse in the family sphere is characterized as a contact of symptoms and actions between a child and an adult or older person where the child is under the control or power of being used as a means of gratification. This crime falls under both criminal and civil crimes in which adults directly engage in sexual activity that exploits minors for immediate gratification of desire . --- Elimination of Domestic Violence Domestic violence is one of the crimes that occur within the scope of the family, which acts through personal relationships between husband and wife, parents and children, children and other children, or people within the scope of the family. Violence between husband and wife is also regulated in the Civil Code or Law Number 1 Year 1974 concerning Marriage. The settlement of such violence is directed into private law because it is considered or deemed that the settlement can be resolved internally within the family relationship . The law on domestic violence is regulated in Law Number 23 of 2004 which was made with several considerations including: first, that every citizen is entitled to a sense of security and freedom from all forms of violence by the philosophy of Pancasila and the 1945 Constitution of the Unitary State of the Republic of Indonesia. Second, all forms of violence, especially domestic violence, are violations of human rights and crimes against human dignity as well as forms of discrimination that must be eliminated. Third, victims of domestic violence, most of whom are women, must receive protection from the state and society to avoid and be free from violence or threats of violence, torture, or treatment that degrades human dignity. Fourth, in reality, there are many cases of domestic violence while the legal system in Indonesia has not yet guaranteed protection for victims of domestic violence The elimination of domestic violence is a guarantee provided by the government or state to prevent and overcome violence that occurs in the household. Not only prevention efforts, the government also takes action and strict sanctions against perpetrators of domestic violence. Protection of victims due to violence is also necessary both with law enforcement and recovery efforts for victims . Many cases of violence occur against women and children. Not only discrimination against the victims themselves, but there are also many cases of violence such as cases of physical or sexual abuse and cases of domestic violence. Society's view of women is still low because women are considered soft, feeling, patient, and weak creatures. So in this case the position of women is less favorable . Judicial decisions related to criminal offenses against perpetrators of domestic violence cases can be listed as regulated in the Criminal Code . Domestic violence generally occurs against women and children. The number of cases of violence against women and children is no longer a public secret. Therefore, Law No. 23/2004 on the Elimination of Domestic Violence was made and passed. Not only is there a guarantee of protection against violence for victims, but there is also a need to guarantee protection in the eyes of the law for defendants, witnesses, and or their lawyers. The guarantee of protection against violence against children lies more in the adjudication process. This is because the defendant or his/her lawyer during the court session has the same rights in the eyes of the law to be able to stand upright as a party equal to the prosecutor . According to Iksan , both material and formal criminal law policymaking must be carried out comprehensively through a value approach and a policy approach so that it is more effective in preventing and protecting society from acts of violence. --- Protection of Victims of Domestic Violence Legal protection for victims of crime is part of community protection that can be realized through various efforts such as providing restitution and compensation and legal protection for victims of violence . The difference between compensation and restitution is that compensation is requested by the victim and paid by the community in the form of responsibility of the community and the state for victims of acts of violence. Meanwhile, restitution is a form of responsibility that is more likely to lead to a crime that is accounted for by the defendant as a convict. Victim protection can be direct and indirect and the provision of responsibility can be in the form of material or non-material. Protecting the human rights of witnesses and victims is regulated in Article 11 of Law Number 13 of 2006 concerning Witness and Victim Protection. The Law states in paragraph that LPSK is an independent institution, in paragraph LPSK is domiciled in the capital city of the Republic of Indonesia, and in paragraph LPSK has representatives in the regions as needed. Article 28 of Law Number 13 of 2006 regulates agreements with the Witness and Victim Protection Agency for witnesses or victims of criminal acts . --- The impact of domestic violence cases on children and women The first form of domestic violence is physical violence which can cause victims of violence to experience pain both internal and external injuries. Second, psychological violence for victims is a result of behavior or actions that cause victims to be helpless, excessive fear, loss of self-confidence, and mental burden due to anxiety and problems that always arise both in their hearts and minds. Third, sexual violence is an act of violence that causes the victim to experience depression, and fear because of actions that the victim does not like, accompanied by coercion or persecution. Fourth, domestic neglect can cause victims to feel unprotected, not getting attention, and even not getting their rights as they should . The violence that occurs against women and children in the household not only affects physical conditions but also psychological conditions. Children who receive domestic violence tend to have a closed attitude filled with fear. Violence that takes place and occurs repeatedly is a situation that hurts and pressures someone who experiences it. Any action that causes pressure, threats, or criminal acts is included in social problems. Such conditions are very Vol.2, No.8, July 2023 painful and tend to cause pressures that result in psychological disruption. A wife who experiences physical and sexual violence has an impact on a psychological crisis that makes her even more depressed and unable to trust herself. Not only that, sexual violence causes suffering for a wife where she will lose sexual dysfunction and disease in the female area . --- Recovery Efforts for Victims of Domestic Violence Once it is known that the victim has suffered an act of violence, the victim has the right to receive recovery efforts. In this case, the family and community are expected not to look badly at victims of violence, which will affect the victim's psychological condition because they receive bad assumptions from the surrounding environment. The government and health or medical institutions play an active role in supporting the course of recovery efforts. The implementation of these efforts must be carried out in a coordinated and integrated manner from the central, provincial, and district level sectors. Not only for the recovery of victims but for the smooth implementation of the recovery process for victims of violence, there needs to be cooperation between government agencies and community involvement. The implementation of recovery is an action taken for victims of violence through service and assistance to victims. These services and assistance include health worker services, victim assistance, counseling, spiritual guidance, and resocialization. The forms of service are described as follows: First, through health services. Victims of violence are entitled to recovery services and receive medical treatment, especially from health workers. Second, victim assistance. Victim assistance in this case is by counseling victims of violence. Third, providing counseling. The provision of counseling is carried out by experts related to the ability to understand the psychological self to help solve the problems faced by victims of violence. Fourth, through spiritual guidance. Spiritual guidance aims to provide explanations and directions related to the rights and obligations to God that must be carried out by victims of violence as a strengthening of faith and piety by their respective beliefs. Fifth, resocialization services. Resocialization is a service carried out by social agencies by providing direction to victims of violence so that victims can return to carrying out their social functions in community life . --- CONCLUSION Violence is an act of hurting another person either directly or indirectly that causes suffering to the victim. Domestic violence is included in crimes that can hurt victims. The negative impacts felt by victims of violence are physical, mental, and psychological. Generally, victims who experience violence will feel psychological disturbances due to the violence they have experienced. The violence is not only seen physically but causes deep mental suffering for the long term. The motives for these crimes are usually due to disharmony in family relationships, lack of communication, economic problems, infidelity, drug use, lack of closeness to the Creator, and so on. The rise of these crimes and the high rate of violence that occurs in Indonesia is one of the cases that needs to be addressed by the government. Various efforts have been made by the government such as making laws and regulations related to the elimination of domestic
Domestic violence is a distressing criminal offense that can result in severe legal repercussions, including imprisonment, as well as profound and lasting effects on its victims. This pervasive issue often involves one family member inflicting harm on another within the confines of their own home. Discussing domestic violence is no longer a societal taboo, as awareness has grown about the importance of addressing and preventing such cases. The motives behind domestic violence are complex, stemming from issues like relationship disharmony, financial strain, poor communication, and more. These underlying factors can trigger a range of abusive behaviors, leading to physical, emotional, and psychological harm for the victims. These abuses can manifest directly or indirectly, through threats, manipulation, or physical violence. The consequences of domestic violence are not limited to the short term; they can have enduring effects on the victims' lives. Physically, victims can sustain injuries that may require medical attention, while the emotional and psychological scars can linger, affecting self-esteem, mental health, and overall well-being. It is crucial to address this issue through legal means, support, and education to break the cycle of domestic violence and protect its victims.
Introduction The media is considered a critical channel for information dissemination and communicating a broad range of health messages . Public health programs have used broadcast media , print media , and social media to reach large audiences in awareness creation and behavior change communication campaigns . In addition to being a source of information, education, and entertainment, media can also be a channel for advocacy in advancing public health policy initiatives . Specifically, it can be used as an advocacy tool to help leaders set policy agendas, form discussions on various topical issues, and support perspectives that can shape the political decision-making process . But, the media in this regard is underutilized . Many individuals, including policymakers who are often the decisionmakers, and public health programs do not appreciate the role that media has in shaping and improving public health programs and in holding officials accountable for their commitments. Moreover, media organizations often do not see themselves as contributors to public health, even though they play an important role in providing accurate, evidencebased, data-driven information on health topics . Media's role in advancing policy discourse is critical as oftentimes it can help drive citizens to pressure leaders to address health concerns . In Kenya, the Ministry of Health typically uses broadcast and print media to widely convey health-related commitments and messages, including those around family planning . Many FP and social behavior change programs promote health messages on contraceptives and strive to dispel myths and misconceptions among communities . While a project may include an advocacy component in addition to core activities, e.g., service delivery or demand generation, there is limited information on how health programs, specifically FP, have used media for advocacy and accountability. Advance Family Planning implemented in Kenya by Jhpiego aims to increase the financial investment and political commitment needed to ensure access to quality through evidence-based advocacy. AFP project incorporated the use of media advocacy as a core component of its interventions in Kenya to complement AFP and stakeholders' advocacy efforts by deploying media strategies that generate and sustain dialogue on the family planning needs in Kenya and beyond. The media created awarenes of family planning and the need for it among the people while challenging policy makers to play their role in helping improve access and acceptability of contraceptives. This paper highlights the lessons learned, challenges encountered, and recommendations for using media as an advocacy tool for FP programs in Kenya. --- Program description AFP was launched in 2009 to increase financial investments and political commitments to ensure access to voluntary, quality, FP through an evidence-based SMART advocacy approach . This approach is a guide to developing advocacy strategies that lead to quick wins by reaching the right decision-maker with the right message at the right time. In 2016, a media component was incorporated into the Kenya project to reinforce accountability on FP commitments. The project worked with journalists and editors from national and local media houses in 16 AFP focus counties . The project focused on these counties because they had existing champions, political leadership, and had prioritized improving FP indicators in their county action plans. --- Media advocacy engagement strategies 2.1.1. Know your advocacy needs: create a distinct media strategy for advocacy Media advocacy is defined as the strategic use of mass media to advance policy change . We developed a media advocacy strategy in 2016 to advance our overall FP advocacy plan. With the understanding that media advocacy is the strategic use of mass media for advocacy and centered on decision-makers to change policy, the strategy aimed to engage the media to produce data-driven, compelling FP stories and reports to catalyze decision-makers to act. The media strategy focused on engaging the media to overcome FP policy and implementation barriers; influence national and county governments, donors, and implementing partners to adopt or improve FP programs; profile evidence related to policy and programs under consideration or in practice; and refute misinformation. The strategy also focused on unlocking new domestic funding for programs, including private sector funds, highlighting progress towards FP commitments and plans, and supporting accountability. The media strategy sought the production of newsworthy stories that would lead to "earned media," in the form of donated public service announcements and additional news coverage, rather than paid media placements . To lead the media component, we recruited an award-winning journalist who was employed as part of the advocacy team. The health journalist supported journalists to access the latest data and research as well as training to improve their family planning storytelling. The project leveraged her expertise and understanding of how the media works to pitch FP as newsworthy content, leading to buy-in by media editors. --- Understand the media: conduct a media landscape assessment In 2016, we conducted a media landscape assessment in Kenya to understand how different media houses work, identify the kind of stories they carry, and analyze how they frame issues. The assessment focused on reporting on FP to identify ways it could be improved. Terminologies related to FP were identified and used to review content from the major national print publications and radio and television stations. The assessment team classified stories into feature stories and event-related stories to understand which newsrooms and reporters covered which type of health, reproductive health, or FP stories. The assessment provided insights into how different media houses treat stories about development and health, specifically reproductive health and FP. The assessment looked at story placement in newspapers and the amount of airtime given to FP stories. It also identified newsrooms with special segments on development, for potential FP stories. The assessors analyzed journalists' style of reporting and became familiar with their work. They also conducted an analysis of newsroom editors and leadership to understand their positions on FP topics. --- Decide who to involve: select media houses and journalists Based on the media landscape assessment, the project cultivated relationships with 16 media houses at the national and county levels. At the national level, we targeted organizations that have a wide, national reach and those with special development sections. At the county level, we focused on popular local radio stations. AFP in Kenya organized one-on-one meetings with national and county-level editors and leadership, since they decide when or whether to carry a story. Our team explained how coverage of FP stories from different angles would help enrich their news coverage and discussed possible partnerships with the newsrooms in areas of access to reliable data; facilitating interviews with credible sources, including policymakers, FP users, and advocates and critics of FP; and capacity building for journalists. We secured the buy-in from editors who saw it as an opportunity to enrich their content with well-researched, in-depth, and compelling stories. AFP requested the editors to select journalists for capacitybuilding workshops to institutionalize this engagement within the media houses. All the editors from the selected media houses responded positively, underscoring the importance of the assessment in establishing their interest. Editors chose journalists who were interested in reporting or writing feature stories on health, specifically reproductive health. At subnational level, selections were based on journalists' interests in feature stories since many local radio stations do not have an expansive pool of beat reporters who specialize in health. Between 2016 and 2022, 41 journalists were identified from four national newspapers, four national TV stations, one subnational TV station and 18 radio stations . AFP Kenya staff and newsroom editors from the selected media houses who were willing to provide hands-on mentorship worked with the journalists and developed a training guide that combined three main tracks: storytelling, research data and the practice of Family Planning. --- Build capacity: develop and implement a capacity building strategy Editors publish or kill a story based on the quality of an article or its lack of newsworthiness. Many health and development stories, especially FP stories, die because they may not have sufficient data or evidence to underpin their storytelling. We committed to help solve this problem by using workshops to build the capacity of journalists and by sharing more data and scientific evidence on family planning. With better access to data and research and armed with better storytelling skills, the journalists were able to produce numerous compelling stories that were published or aired on different media outlets. Between 2016 and 2022, we conducted 14 capacity building workshops for 41 journalists. These full-day workshops ran for five days. The composition of participants varied, at times they were based on their outletsradio, tv, and print and local vs national-other times there was a mix. Discussions, which also varied depending on current events, covered a wide spectrum of topics on health, science, and journalism, including reporting gaps and opportunities in health journalism. Participants learned how to localize a story if they were producing for a local audience and about story angles-how one idea could yield several pieces over time. They also learned how to use data in storytelling in order to make their stories complete as well as inspire decision-maker actions. While participating journalists had radio, television, or print background, the workshops developed their multimedia storytelling skills and used practical exercises to look at how reporters can harness social media to tell and promote their stories. They also reviewed multimedia data resources and analytical tools. Journalists from national newspapers and television seemed acquainted with these skills, but journalists from the subnational level, which forms a large part of Kenya's pool of journalists, had not been exposed to social media storytelling tools. During each workshop, journalists and their mentors went to the field to look for stories and then worked together during the production process. The workshops explored the concept of narrowcasting, as opposed to broadcasting, of directing FP and healthcare stories to the right channels and using different approaches for different audiences. The workshops also included story congresses, which provide journalists with an opportunity to share story ideas and get input from fellow journalists and editors on how to produce it. --- Monitor Implementation: conduct progress review to support the trained journalists We developed a monitoring and evaluation plan that included indicators for tracking media advocacy initiatives. The project developed a story log template, which was completed by the trained journalists and included links to the articles, to track stories that had been aired by the journalists and actions taken because of the stories. Journalists who participated in the workshops shared logs of their stories, which the project used to determine which stories required follow-up. We created a WhatsApp mobile phone group to bring together the trained journalists, the mentors, and AFP staff. The journalists used the group to share ideas and asked for guidance. The mentors advised on approaches and other mentorship opportunities or collaborations. From 2018-2022, we organized follow-up media workshops to evaluate and improve the capacity of participating journalists by assessing their progress in storytelling and offering additional mentorship. --- Thinking beyond the project: enhance sustainability As part of its sustainability plan, we approached its pool of senior editor mentors to discuss ways in which they can continue mentoring journalists on a pro bono basis. They agreed to form an editorial mentorship board. The editorial mentorship board played a critical role in continuing virtual mentorship during the COVID-19 lockdown, when in-person review meetings were cancelled. With COVID-19 shifting attention to the pandemic, the board developed FP story ideas to help the journalists to put a spotlight on continuity of essential services during the pandemic. --- Impact of media engagement The media plays a critical role in setting agendas and framing issues. FP advocates have used stories produced by journalists to catalyze decision-makers to act and hold them accountable. To harness this unique role, we acknowledged the journalists' independence; the project did not influence the story production process-all stories produced were led by journalists. Whereas AFP supported journalists, we did not demand any publicity from them, only encouraging them to produce the best stories on the cause. This allowed journalists to focus on telling the best possible stories they could. Cognizant of the fact that media houses are wary of promoting brands, our approach was to develop champions who can tell a story based on its newsworthiness without receiving incentives or paid advertisement. This freedom may have contributed to several advocacy wins as illustrated below. • Enhancing accountability: In January 2019, three Migori-based journalists became aware of a stock-out of FP supplies in some of the facilities in Migori County and produced and aired a radio story covering the problem. Then, they aired an interactive radio talk show on FP with the county health promotion coordinator. During this show, women called in to concerns about contraceptive stockouts in some of the public health facilities. The county health promotion coordinator promised to act. Following the show, the county health department reviewed the status of FP stocks in all facilities and redistributed supplies to facilities experiencing stockouts. The county's health promotion officer then issued a statement on radio about the redistribution and encouraged citizens to go to the facilities for services. The memorandum emphasized the need to ensure the continued supply of FP commodities. The Ministry of Health reinforced the directive with specific guidelines for continuing essential services. In the months that followed, FP service provision not only recovered from its previous dip but also increased to levels higher than those seen in 2019 . • Unlocking private sector money: Public health programs utilize media for health education and communication and, in many instances, will pay for segments to be aired. Media houses consider these to be advertisements and a source of income. As part of its media advocacy strategy, we engaged senior editors and managers of popular county radio stations to provide airtime for FP stories at their own expense. This was achieved by packaging FP as a critical driver of community development and making a business case for the media. Between 2016 and 2021, 11 radio stations dedicated free airtime for FP stories, which would have cost $757,150, excluding production costs. Commitments from local media houses included airing feature stories that linked FP to development and following up the stories with live, call-in discussions by hosting experts in the studio. The free segments provided an opportunity for stakeholders to provide FP information, including dispelling myths and misconceptions, without cost. --- Unanticipated outcome of media engagement 3.1.1. Establishment of FP journalist community of practice Training of journalists on their own has not been effective in the past due to lack of continuous engagement. Therefore, we set up a community of practice to bring together participating journalists and editors to provide a platform for continuous engagement, peer-to-peer learning, sharing of resources, and discussing challenges and opportunities. Due to the shared vision that was inculcated from the onset, journalists from competing media houses decided to collaborate to amplify FP stories nationwide. They formed a WhatsApp group for day-to-day interactions. --- Journalist-led FP stories The workshops had the corresponding benefits of introducing the process of creating a critical mass of FP storytellers in Kenya and "strengthening the program's relationship with partners in the country." As a result of the first workshop, within the first two months, journalists published or aired 31 stories. Because these stories were journalist-led, no payment was made for the coverage, which is integral for sustainability. Continuous mentorship sustained momentum, leading to an increase in the number of relevant stories aired at various media outlets. By the end of 2021, more than 250 stories on FP had been aired or published . Additional workshops increased the pool of journalists who are interested in FP-related issues. --- Scale up to other countries The media advocacy engagement strategy in Kenya proved to be scalable; as a result, AFP adopted this approach, scaling up implementation in Uganda, Nigeria, and Bangladesh. --- Challenges Although progress has been made since the start of the project in Kenya, FP is still not widely accepted, which remains a major challenge to increased media coverage. During performance review meetings, some trained journalists reported that they faced opposition from editors based on the editor's personal beliefs. This was especially noticeable among journalists who were from faith based media houses. Even though they had been identified to be trained, they did not receive adequate support needed to air their stories. Another challenge was that some journalists did not consistently produce FP stories. FP stories are not commercial advertising, which generates income for the media house, which makes it difficult for journalists to have more engagement on FP since most of them are paid for the work that they deliver. Moreover, during the onset of COVID-19 pandemic, due to reduced revenues, media houses sacked six of the trained journalists, further reducing the pool of journalists airing FPrelated stories. --- Lessons learned Following the five years of implementation of media advocacy, we concluded that the following lesson learned, and best practices are essential when conducting media advocacy. • Do not expect journalists to report a story from your perspective. When we trained journalist, they had the freedom to write stories as they deemed fit. This at times did not go as per the project's expectation. Although we invested in training and mentoring a journalist, we did not expect that they would report stories from the project's angle. They exercise their own independence and thrive on pride that they are leading the story, not the project implementer. By adopting this approach, the journalists are able to own and drive the process and AFP was able to get a critical mass of FP stories. • Do not expect journalists to profile your organization. An organization working in media advocacy must trade off its own visibility, public relations, for the public good. For greater impact, we decided to take a back-seat and allow the journalists to focus on issues and not profile Jhpiego as the implementing organization. Many organizations would like to be profiled to enhance their visibility, but this is often interpreted as public relations, which should be paid for, not as a public interest story. If a story is led by an implementing partner, decision-makers tend to look at issues such as who are the funders and what is their motivation; a credible story can be dismissed on the perceived ground of a vested interest. Moreover, paying for content for FP media advocacy may negate efforts since it might be misconstrued as pushing for a specific agenda. Thus, journalist-led stories, earned media, might provide gains that are sustainable beyond the life of an advocacy project. With the onset of COVID-19 pandemic, some trained journalists lost their jobs. However, they continued their conversation through their social media presence due to their massive following. --- Conclusion The Advance Family Planning worked to achieve the global goal of expanding access to quality contraceptive information, services, and supplies by providing decision makers with evidence that family planning is a sound investment for individuals, communities, and a nation's future, and is a fundamental part of universal health coverage and achieving the Sustainable Development Goals. This paper offers AFP project's perspective on implementation of advocacy work in Kenya that incorporated media strategy as a core component of advocacy for engaging FP decision-makers. Our experience shows that media can play an important role in prompting decision-makers to act. It can also hold them accountable for their actions . For example, following the publication of a story titled 'Policy stalemate: To offer contraceptives to adolescents or not?, in addition to other advocacy efforts, MoH resumed consultation convening on draft reproductive health strategy. Media advocacy efforts also contributed to the fast tracking of Kwale County's multisectoral action plan on addressing teenage pregnancy. The multisectoral approach to addressing teenage pregnancy was later scaled up to 7 other counties and led to a national dialogue on the burden of teenage pregnancy. On advocacy efforts relating to expanding access to all contraception services, the example of Migori county redistributing FP commodities to facilities that lacked certain methods shows how the media helped in challenging the county governments to meet their commitments to the citizens and ensure delivery of services to the last mile. WHO estimates that family planning increases economic growth per capita by 20-30% and avert 54% of preventable maternal deaths and 47% of preventable child deaths. With such great returns in investing in FP, advocacy is essential if countries are to meet their global commitments on FP of delivering contraceptives, information and services and upholding human rights. The media can spotlight and amplify community voices that are ignored during policy dialogues and ensure follow-up by policy and program leaders. --- Data availability statement The original contributions presented in the study are included in the article, further inquiries can be directed to the corresponding author. --- Ethics statement The studies involving human participants were reviewed and approved by Maseno University Ethics and Review Committee. Written informed consent for participation was not required for this study in accordance with the national legislation and the institutional requirements. --- --- --- Publisher's note All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
Media can not only play a critical role in informing and educating the public on health issues, but it can make a powerful contribution to advocacy of public health matters. In Kenya, Advance Family Planning (AFP) initiative used this approach to further the country's progress in achieving family planning goals. This case study documents AFP experience in supporting media to engage leaders and decision-makers on the need to unlock bureaucratic bottlenecks that limit success of family planning services. AFP's media efforts added weight to the work of advocates who push for increased political commitments and investments in family planning. Media advocacy efforts helped catalyze actions by decision-makers across Kenya-focusing on strengthening accessibility and availability of contraceptive methods and fast-tracking implementation of policy actions to address adolescent pregnancy. Media advocacy efforts contributed to advancing family planning initiatives in the country. Media advocacy should be a key pillar of family planning programs and of other sectors.
INTRODUCTION Ageing is a natural process which results from the impact of a wide variety of molecular and cellular damage over time. 1 According to Senior Citizens Act Nepal , senior citizens mean a citizen of Nepal having completed the age of sixty years. 2 Globally, the ageing population is increasing rapidly. 1 The percentage of the elderly people over 65 years almost doubled from 6 per cent in 1990 to 11 per cent in 2019 in South-Eastern Asia. 3 With the increasing age numerous physiological, psychological and social role changes and develops the risks of chronic disease. 4 As a result of such illnesses, a person's reliance and care is placed on family members, at the same time elderly need support from family members. 5 Family support provides necessary care for the elderly. This support improves health and well-being of older people. 6 Thus, the objective of the study was to assess the perceived family support among elderly. --- MATERIALS AND METHODS A quantitative descriptive cross-sectional research design was carried out in the community ward number 4, Gokarneshwor Municipality. The study period was from July to October 2022. Total 216 elderly people aged 65 years and older living with family, who could understand and communicate in Nepali language, had not been diagnosed with mental health problems, those who were available at their home and willing to participate on a voluntary basis were included in this study. Elderly those who have hearing and speech related problem, bed ridden, physically and mentally ill was excluded in this study. Non probability purposive sampling technique was used to select the samples. Family Support Scale is a valid standard tool was used to collect data about family support among elderly. 7 Permission was taken from the researcher to use this tool. FSS includes 20 items consisting 4 point likert scale with possible scores ranging from 0 to 3 . Total scores were ranging from 0 and 60. Higher scores indicates perceived high support and lower the mean score was indicate low support. Pretesting of instrument was done in 10% of estimated sample size which was 21. Pretesting was done in ward number 7 of Gokarneshwor Municipality. A modification was not required to the questions that measured the family support among elderly. The researcher, with the help of the bio linguistics translator, translated the questionnaire to Nepali, which was again back translated to English. Reliability of instruments was maintained by cronbach alpha which was 0.79. The result of cronbach's Alpha was 0.94 in the original study. Data collection was conducted only after obtaining the formal approval from research committee of Nepal Medical College, Institutional Review Committee . Formal written permission was obtained from ward number 4 of Gokarneshwor Municipality for data collection by submitting the request letter from Nepal Medical College. Informed and written consent was obtained from each elderly and objectives of the study were explained before data collection. A face to face structured Interview schedule was used to collect data. During data collection privacy was maintained by taking interview separately at the corner of home setting. Confidentiality of all the data was maintained. Each day 12 respondents was interviewed for 10-15 minutes each working day by using family support scale questionnaire. The data coding, entering and analysis were performed by SPSS version 16 Software using both descriptive and inferential statistics. Descriptive statistics such as frequency, percentage, mean, standard deviation and inferential statistics was used to assess the association between the variables chi-square was used at 95% confidence interval level . --- RESULTS Table 1 shows the socio-demographic characteristics of respondents. The age of respondents ranged from 65 to 91 years. The mean age was 72.88±6.6 years. Regarding gender, more than half was female and 47.2% were Male. More than half were married whereas 0.5% unmarried and 36.1% were widowed. In terms of education, nearly one third of respondents were illiterate whereas 18.5% literate, 5.6% primary, 4.6% secondary and 1.8% had secondary and above. In reference to types of family, more than one third respondents were living with the joint family. Majority of respondents were not employed. Table 2 depicts that almost all respondents have at least one source of family income. More than half reported the sources of family income by Son. Likewise, 59.50%, 22.30%, 11.20%, 20% and 13.5% income sources were from allowances, agriculture, pension, daughter, husband and others were the source of family income respectively. Most of the respondents stated that family members , wife and husband were the primary source of family support to provide care. More than half respondents reported that they have chronic disease. Regarding financial dependency, 68.1% were dependent for money towards the family members. Table 3 shows that 44.4% respondents reported that their family loves some to them. Nearly half respondents stated that they get some respect from their family. Nearly one third respondents get assistance for daily living activities. 78 respondents mentioned that they involve in religious activities with the help of family members. Little more than one third respondents communicate that they received less useful information from their family members. One third respondents received less emotional support. 35.2% respondents experienced that their family members share little important decision. Some few respondents express that their family members do not understand their personal desires.36.6% respondents received little support to participate in social events. Nearly half get much support to listen problems by family members. Nearly half respondents get some support for problem solving. Less number of respondents stated that family members were not aware of --- DISCUSSION In the present study most of the elderly were financially dependent on their family. A study from India supports the findings of recent study suggested that respondents received financial support from spouse and family members. 8,9 The recent study shows that more than half respondents reported the sources of family income by son which is supported by the study conducted in Pakistan. 10 The current study shows most of the respondents stated that family members and spouses were the primary source of family support to provide care. Similar findings were observed in the study where it was reported that spouse can be an important support for both male and females as the males can looks after for finances and females take care of health issues. 11 As per the recent study it is reported that more than half respondents have chronic disease. The other various studies showed that the prevalence of chronic disease was high among the elderly. 11,12 In this study it was found that more than one third respondents perceived some form of supports from family and nearly one third respondents get much assistance for daily living activities. This finding was in line with other study. 6 Furthermore, one third respondents received less emotional support such as respect and some reported no emotional support perceived from family members. However, contrasting findings were observed in the study of Indonesia and Kathmandu where elderly appreciated the emotional support given by their family. 6,13,14 In addition to this, nearly half of the respondents reported that their family loves them to some extent. This is consistent with the findings of the study carried out in Indonesia. 6 The present study revealed that 35.2% respondents had experienced that only few of their family members involve them in decision making. This might be due to busy schedule, stressful life and work exhaustion. The current research finding was supported by a study conducted in Kathmandu and Pakistan which depicts that the family of 44.79% and 61.7% respectively respondents never/ seldom involved them in sharing important decision. 10,13 However, another study conducted in India is contrast where some respondents reported that their family members did not involve them in decision making. 15 More than one third respondents communicate that they received little support to participate in social events. The findings of present study displays less number of respondents had received much support to attend social event. In contrast to this a study conducted in Pakistan shows 54.2% respondents were allowed to attend social events to great extent. Furthermore, the current study revealed that nearly one third respondents reported that they were allowed some support and 18% were not allowed to attend social event, which was similar with the results of other study. 10 The results of recent study displays that half respondents stated that their family members listen to their problems and helps in problem solving. Similarly a study conducted in Kathmandu depicts a consistent finding. Regarding personal desire, in our study a few respondents expressed that their family members do not understand their personal desires which is contrary to the study conducted in Nepal. 13 The findings of the present study demonstrated that few respondents stated that family members were not aware of their health. Half of the respondents reported that they get support for treatment by their family members. In the study done in the Indonesia, it was found that elderly received great attention towards their health and family support to access the health care services. 15 We found that 60.2% respondents expressed that their family members gives money when needed. Various studies supported this finding where respondents had received financial support from their families. 6,13,15 Likewise, more than half respondents reported that daughter in law, son and spouse of elderly cares about food. The result of the study is consistent with the findings of Indonesia. 16 Regarding happiness and satisfaction, more than half of the respondents stated that they were happy and satisfied with family support. Similar finding was observed in India and Indonesia where majority had received good support from their homes. [14][15][16] As per literature review good family support from their family members was found 55.1% and 77.5% respectively whereas in our study it was found that more than half respondents perceived low family support from their family members. Only 44.9% had high family support. However, it is similar to the recent study where 64.10% had low family support among elderly. 10,17,18 The present study discovered that the literate respondents perceived high family support than who were illiterate. A study conducted in Indonesia and India showed consistent findings as ours, educated elderly people had perceived better family support. 15,17 In this study, the results of chi-square test with a confidence level of 95% were obtained as a result of p-value 0.015 which means that there is statistical association between ages of respondents with level of family support which is similar to the study findings of Indonesia. We noted that there is an association between educational level and employment with level of family support. The present findings are consistent with findings of previous studies conducted in different countries. 17 Our study results conclude that respondents with chronic disease perceived less family support and those who have no disease have perceived high family support. Other studies support as our conclusion that medically healthy aged people perceived better family support. [19][20][21] Regarding financial dependence the present study found that those respondents who were financially dependent have the perception of low family support than who were not dependent. However, there is no statistical significance between chronic illness, financial dependent and level of support. This finding is contradictory to the finding of study done in India which shows significant relation between chronic illness, financial dependent and quality of life and family support. 15 In conclusion, our study findings reported that the overall perceived family support of elderly from their family members was low. Less than half perceived high family support. The age groups of 65-75 years old perceived high family support than older. There is an association between age groups, education level, employed and level of family support. Illiterate elderly perceived low family support than literate. Those who do not work have felt low family support. These findings suggest that family members should pay attention towards all elderly in emotional and informational support which contributes to their health and well-being. As participants were limited to the Gokarneshwor, Municipality this limits the geographical diversity and implies difficulty in generalizing the findings to other settings. A detailed in depth study can be done related to family support for elderly in rural areas. --- Conflict of interest: None Source of research fund: None
Family support is an essential factor among the elderly to maintain health and wellbeing. Most of the elderly are living with the family and depend on them for care. However support from family has been decreasing with the increasing age. The objective of the study was to assess perceived family support among elderly residing in Gokarneshwor, Kathmandu. A descriptive cross-sectional research design was used for conducting this study among 216 elderly residing in Gokarneshwor Municipality of Kathmandu over a period of July 2022 to October 2022 through non-probability purposive sampling technique. Data collection was done by using face to face interview using valid standard tool for family support scale (FSS). Data was analyzed by using SPSS version 16. The results of this study showed that more than half (55.1%) respondents perceived low family support from their family members. Only 44.9% had high family support. Respondents who had chronic disease were financially dependent perceived low family support. There was significant association between perceived family support and age (p=0.015), educational level (p=0.013) and working elderly (0.001). The study concluded that family support perception from elderly was low and some elderly was perceived high support from their family members. However sleep related care, information and decision making support was perceived less than other variables. Family members should be encouraged to build positive family relationship with elderly and involve them in wise decision making.
INTRODUCTION Evidence for an association between substance use/abuse/dependence and early school dropout and reduced lifetime educational attainment is mixed . Although some studies suggest that alcohol use during adolescence is associated with reduced educational attainment , others have found that the association is not significant when additional control variables are included . In contrast, a number of studies have found that smoking is predictive of high school dropout , and of failure to pursue education beyond high school even after controlling for covariates. Similarly, most studies examining adolescent cannabis use suggest that cannabis use remains significantly associated with reduced educational attainment even after controlling for covariates . Interestingly, McCaffrey et al. found that the association between cannabis use and school dropout became non-significant once cigarette use was included. In examining the association between substance use and reduced educational attainment, it is necessary to account for potential confounders, i.e., factors that might contribute to alcohol/ drug use liability and also influence academic performance. Previous research has indicated that both educational attainment and substance dependence are heritable. Especially pertinent to the present study, Bergen et al. , found evidence suggesting genetic overlap between drug abuse and educational attainment in a twin study, and Dick et al. found evidence implicating CHRM2 polymorphisms in association studies examining substance use disorders and IQ/ cognition. The discordant twin design provides an elegant strategy for the control of potential genetic and environmental confounds. Similar to a matched pair analysis, in which cases are matched to controls for gender and age, the discordant twin design matches at-risk twins to control twins thereby controlling for genetic and shared environmental influences . In pairs of monozygotic/identical twins discordant for early cannabis use, any reduced educational attainment in the early-onset cannabis using twin can only be attributed to "causal" mechanisms or those environmental factors that are not shared by members of twin pairs, but not to shared genetic or environmental influences. The utility of this design has previously been demonstrated in multiple studies that have found increased likelihood of other illicit drug use in the twin who uses cannabis or alcohol at an early age when compared with their non-using or later initiating cotwin . In the present paper, we address several limitations in previous research by using a cotwin control design to test the hypothesis that cannabis initiation, early alcohol and cannabis use, daily nicotine use for a month or longer, and lifetime diagnoses of alcohol, nicotine, cannabis, and any illicit drug dependence remain associated with reduced adult educational attainment after controlling for familial influences. First, by examining twin pairs discordant for substance use/dependence, we are able to control for genetic and environmental confounds that might contribute to the association between substance use and educational attainment. Second, because our participants were in their late 30s when their educational attainment was assessed, we are better able to address lifetime educational attainment than are most previous studies, which have focused on high school dropout or educational attainment in 18-25 year-olds whose eventual educational level might not have been reached . Third, we examine educational attainment in a veteran cohort that had access to education via benefits of the G.I. bill, thereby alleviating some of the economic barriers to higher education that might otherwise be confounded with alcohol and drug outcomes. --- MATERIALS AND METHODS --- --- Measures Substance use and dependence-All participants were asked the age at which they had first consumed any form of alcohol "at least once a month for 6 months or more". Participants who endorsed either this stem question or who indicated they had consumed 5 or more drinks in one day were considered drinkers . Because alcohol use was endorsed by almost all participants, our base alcohol variable was early alcohol use, which was defined as the onset of alcohol use before age 18. Participants were asked whether they had "ever smoked [tobacco form] daily for a month or more", but were not asked about age of initiation. Respondents who indicated they had smoked cigarettes, cigars, or pipes daily or used snuff or chewing tobacco daily for a month or more were considered to be nicotine users, which was the base measure of nicotine exposure in our analyses. Both cannabis use and early cannabis use were examined. The early substance use cutoff of age 18 was selected because it was generally prior to entry into the military and was stringent enough to apply to only a minority of participants. All substance use measures were based on the 1992 telephone diagnostic interview. Alcohol, nicotine , cannabis, and any illicit drug dependence phenotypes were defined according to lifetime DSM-III-R criteria. Any illicit drug dependence combined separate assessments of cannabis, cocaine, stimulants, sedatives, opiates, and hallucinogens/ PCP . All substance dependence diagnoses were based on the 1992 telephone diagnostic interview. Educational Attainment-Educational attainment was assessed in the 1987 mailed questionnaire by a single item "What is the highest grade or year of school you have completed and gotten credit for?". A cutoff of less than 16 years of education was used for the present analyses because that is the typical timeframe for completion of an undergraduate degree. Covariates-Because we have previously found DSM-III-R diagnoses of major depression , conduct disorder , and posttraumatic stress disorder , as well as service in Southeast Asia, to be significant covariates when examining the relationship between early substance use and adult drug dependence ), these variables were included in all adjusted models. All DSM-III-R diagnoses were assessed in the 1992 telephone diagnostic interview; service in Southeast Asia was assessed in the 1987 mailed questionnaire. --- Analytic Strategy Data preparation and preliminary analyses were conducted using SAS . Logistic and conditional logistic regression analyses were conducted using STATA , which uses a robust variance estimator to adjust for the nonindependence of data from twins . Pairs of monozygotic and dizygotic twins were identified as being concordant/ discordant on each of the following drug use behaviors: early alcohol use , daily nicotine use, lifetime cannabis use, early cannabis use , and alcohol, nicotine, cannabis, and any illicit drug dependence. In cotwin-control analyses, twin pairs are matched for familial background and vary only in that one is at risk because of "exposure" whereas the other twin is not. The test is whether the "exposed" twin is at increased risk of having a particular outcome compared to the "non-exposed" twin. These cotwin-control analyses permit the assessment of whether the associations observed between substance use behaviors and educational attainment in the general population are: a) attributable to an underlying familial liability , b) are causal , or c) are influenced by both and . As has been discussed in detail by others , depending on the nature of the association between risk and outcome variables, the pattern of association between substance use and educational attainment will vary systematically for the general population vs. MZ discordant pairs vs. DZ discordant pairs, and the pattern of association for these groups can indicate which processes are important. If genetic factors fully account for the association between substance use and educational attainment, then there will be a significant association between the measures in the general population, a moderate association among DZ pairs discordant for substance use, and no association among MZ pairs discordant for substance use . If the association is solely due to shared environmental characteristics, then population > DZ discordant = MZ discordant = 1.0. And if the risk factor causes the outcome , then population = DZ discordant = MZ discordant > 1.0. If both causal and noncausal factors contribute to the association, we would expect to see a pattern where population > DZ > MZ > 1.0. Although it is possible to test for differences in the association between MZ and DZ twin pairs by analyzing the groups separately, this results in a loss of statistical power. Another method involves testing for zygosity differences by including an interaction between zygosity and the exposure variable in the model. If the interaction term is not significant and DZ = MZ > 1.0, then there is no evidence of differential association by zygosity and it is possible to analyze MZ and DZ discordant pairs simultaneously. Alternatively, if DZ = MZ = 1, then the association is non-causal and attributable to shared familial influences. Attrition-Previous research has indicated that the Vietnam Era Twin Registry is generally representative of twins who served in the military during the Vietnam-era . Goldberg et al. reported differences in date of enlistment/discharge, duration of service, branch of service, and service in Southeast Asia between individuals included in the Defense Manpower Data Center database and the State of Connecticut twin register . When examining attrition from the full Registry to the SOH, Henderson et al. found that SOH non-responders were more likely to be non-White, had lower education at enlistment, were younger at enlistment, and were less likely to have served in Southeast Asia. We examined attrition between the 1987 SOH and the full 1992 HDS sample through logistic regressions predicting loss to follow-up. In addition, we conducted a form of propensity score analysis to check whether differential attrition for concordant versus discordant pairs was biasing our conditional odds ratio estimates. A logistic regression equation was used to predict individual non-participation versus participation in the 1992 HDS as a function of variables assessed in the 1987 SOH. Predicted probability of participation was then categorized into quintiles, and this categorical variable, defined for the first twin from each pair, was then included as a moderator in conditional logistic analyses . --- RESULTS --- Attrition Individuals with less than 16 years of education in 1987 were significantly less likely to participate in 1992 , as were minorities . Those who served in Southeast Asia were more likely to participate in 1992 . When we tested for interactions between substance use risk factor and participation probability quintile, we found one marginally significant interaction and two strongly significant interactions , with a negative Beta coefficient for the interaction term in all three cases, implying higher conditional odds ratios in quintiles associated with low response probability. Thus, selective attrition may have caused us to underestimate the true conditional odds ratios for these variables. Further tests using conditional logistic models indicated that inclusion of the interaction term altered the significance of the substance risk factor only for nicotine dependence in the adjusted model , but just failed to reach significance in the main analyses presented below ); all other models yielded the same significance regardless of whether the quintile interaction term was included. --- Descriptive information The distribution of substance use measures, educational attainment, and covariates is shown in Table 1. By 1987, 96.8% had completed 12 or more years of education and 24.1% had at least 16 years of education. Based on the 1992 survey, almost all participants were drinkers at some point in their lives, with about one-third having met lifetime criteria for alcohol dependence. Almost 70% of respondents had used nicotine daily at some time, and almost 50% met lifetime criteria for nicotine dependence. About half of the respondents had ever used cannabis, with less than 7% having a lifetime DSM-III-R cannabis dependence diagnosis. In addition, about 10% of respondents had DSM-III-R diagnoses of depression , PTSD , and conduct disorder before age 16. Almost 40% had served in Southeast Asia. 2 shows the number of individuals in each substance risk group and the prevalence of having completed less than 16 years of education among individuals at varying degrees of risk based on their substance use history. In general, the prevalence of having less than 16 years of education was highest in pairs concordant for the substance risk factor, and decreased through the at-risk members of discordant pairs, to the low-risk members of discordant pairs, to pairs concordant for low-risk. This pattern is consistent with a model in which the likelihood of lower educational attainment increases with increasing substance exposure risk, with one's own substance use patterns having greater influence than one's cotwin's substance use. --- Individual-based associations between risk factors and outcome-Table Logistic regression analyses were used to test the significance of the association between substance use and educational attainment within individuals while controlling for the nonindependence of twin pairs, as shown in Table 3. The first column of Table 3 confirms that, in the general population, each substance use measure was associated with reduced educational attainment, even after controlling for covariates. The remaining columns of Table 3 display results from tests examining whether the three "at risk" groups had significantly lower educational attainment relative to individuals in pairs concordant for low substance risk . In unadjusted models, individuals in all three "at risk" groups had significantly lower educational attainment for almost all substance use measures than did individuals in pairs concordant for low substance risk . We observed little change in point estimates after adjustment for depression, conduct disorder, service in Southeast Asia and PTSD, with many effects remaining significant. The exceptions were cannabis dependence for individuals in pairs concordant for high-risk, and cannabis initiation and dependence in the high risk twins from discordant pairs; alcohol dependence remained unassociated with educational attainment in the low-risk individuals from discordant pairs. --- Pair-wise associations between risk factors and outcome Analyses within twin pairs discordant for substance use and dependence are shown in Table 4. The interaction between zygosity and daily nicotine use was significant, and thus was included in the final model along with the main effect of daily nicotine use. Since no other interactions were significant , the interaction term was not included in the other conditional logistic models. Compared to their cotwins who did not use alcohol before age 18, individuals who used alcohol before age 18 had significantly lower educational attainment before and after covariate adjustment. Similar results were observed for alcohol dependence and daily nicotine use, with a trend for nicotine dependence . However for all cannabis measures and any illicit drug dependence, at risk individuals did not have significantly lower educational attainment than their low-risk cotwin. --- DISCUSSION In this sample of Vietnam-era veteran twins, after controlling for individual-level measured covariates, all of the alcohol, nicotine, and cannabis use and dependence measures were significantly associated with reduced likelihood of completing 16 years of education. However, after additionally controlling for familial contributions to adult educational attainment in cotwin-control analyses, only early alcohol use, alcohol dependence, and daily nicotine use remained significantly associated with reduced educational attainment. Importantly, for all three measures, the odds ratios in the cotwin control analyses fell within the confidence intervals for the odds ratios estimated using the full sample , indicating that controlling for family influences did not attenuate the association. Thus, our data were consistent with the possibility that non-genetic causal influences may contribute to the association between daily nicotine use, early alcohol use, alcohol dependence and educational attainment . In contrast, for all cannabis measures, nicotine dependence, and any illicit drug dependence, the association between substance use and educational attainment was accounted for by noncausal shared environmental factors . This finding is fairly consistent with drug use disorder findings from the Mid-Atlantic Twin Registry reported by Bergen et al. , who found that the DZ regression coefficient was slightly larger than the MZ regression coefficient, although neither was statistically significant. Although they suggested that this was evidence for shared genetic influences between drug abuse and educational attainment, because neither regression was statistically significant these findings could also be interpreted as evidence of a non-causal shared environmental influence. Bergen et al. did not report findings for alcohol use/ dependence or nicotine dependence. That our effects remained for alcohol but not cannabis is in contrast to results reported by King et al. , who found that alcohol use measures were unrelated to college degree completion after inclusion of predisposing factors, but that drug use slope remained significant. These differences could stem from a number of factors, including sampling and measurement. Whereas King et al.'s most robust effects were observed for college degree completion, we did not have an index of degree completed and instead used a cutoff based on years of education completed . For substance use, we analyzed binary measures of use and dependence whereas King et al. used growth models to create continuous slope and intercept measures for consumption. In addition, their drug use measure was a composite of eight illicit drugs; our drug use analyses focused on cannabis, although we did include a measure of any illicit drug dependence . Also, our sample was Vietnam-era veteran male twins with a mean age of roughly 37 years when educational attainment was assessed, whereas King et al. analyzed data from a case-control sample focused on offspring of alcoholics with a mean age of 25 years at the final assessment. Thus age, gender, and military history could also contribute to the different results in our study compared to King et al. . A unique contribution of our study was the examination of educational attainment in an early-middle-aged sample that, because of the benefits provided by the military, had reduced economic barriers to completing adult education. Xie conducted an extensive examination of the educational attainment of veteran versus non-veteran U.S. men, and found that veterans exceeded non-veterans in educational attainment sometime between their late 20s and early 30s; prior to that age veterans had lower educational attainment. This later attainment is important to bear in mind in any examination of veteran samples, as assessments with younger veterans might underestimate lifetime educational attainment. In our data, by 1987 52.2% of Vietnam-era veterans had completed some additional formal schooling beyond their education at enlistment, with 24.1% of the sample having 16+ years of education in 1987 compared to 6.7% at military enlistment. Importantly, in our sample the mean years of education was identical to that observed by Lyons et al. in their Vietnam Era Twin Study of Aging , despite the fact that their participants had a mean age of 54.4 years at interview . This suggests that any individuals interested in educational benefits from the military had taken advantage of this opportunity before 40 years of age. Our finding of a potentially causal association between some substance use/dependence measures and educational attainment, but no support for such a relationship between education and other substance measures , was unanticipated and warrants further attention. It is possible that the initiation of alcohol use and daily nicotine use occurred during a key developmental time for these individuals, whereas the cannabis initiation fell outside this period. There is some support for this, given that our mean age of onset for alcohol use was 18.5 years and for cannabis initiation was 20.1 years. Thus many of these individuals were drinking while still in high school, but most initiated cannabis use after leaving high school. Another potentially important distinction between our measures is that while we examined repeated alcohol use and daily nicotine use, we examined ever use for cannabis. It is possible that repeated use is more critical than initiation in looking at long-term effects on educational attainment. Finally, it is also possible that unmeasured variables are confounding the relationship between education and the licit substances , but not the relationship between education and cannabis/other illicit drugs. Our study is not without limitations. One important limitation is that we have not confirmed that the substance measures predated the educational attainment. We can be almost certain that early use occurred before participants finished their schooling, however there is less certainty regarding the temporal sequence for the dependence measures. Although we can date the onset of first dependence symptom, we do not have any measures that assess when the individuals completed their formal education, making such an examination impossible with the present data. We cannot exclude the possibility that unmeasured environmental confounders impacted both our substance disorder measures and educational attainment. Although we attempted to control for possible confounders, additional work is needed to confirm that this association holds in other populations and after control for additional variables. For example, cognitive ability has been implicated in both substance use disorders and educational attainment, although without prospective data it is impossible to tell whether low cognitive ability is a cause or consequence of substance involvement. Along this line, research by Latvala et al. has shown that verbal ability and psychomotor processing speed are reduced in individuals with substance use disorders, with evidence that educational attainment may mediate the association between verbal ability and substance use disorders. Our use of a veteran sample potentially limits the generalizability of our results. First, the near universal requirement of completion of high school for service in the military means that while our analyses are able to address the effects of substance use history on educational attainment among high school graduates, they can say nothing about the effects of high school dropout on early substance use and vice versa. Second, because the Registry is based on twin pairs in which both individuals were in the military during the Vietnam-era, the sample may not generalize to twin pairs that were excluded from the Registry . Third, Henderson et al. found that nonresponders in the Survey of Health were less educated at military enlistment than responders, so the educational attainment in this sample may not be representative of all veterans. Finally, the present sample of male Vietnam-era veterans was predominantly Caucasian, thus results may not generalize to other ethnicities, to women, to non-veterans, or to cohorts who grew up in an era with different levels of acceptance of and/or access to cannabis. Regarding the cotwin-control analyses, it is possible that selective attrition biased our results, although our examination suggests that any selective attrition for smoking-related behaviors contributed to an underestimation of conditional odds ratios and thus reduced our likelihood of finding differences. Additionally, given the small numbers of pairs discordant for early cannabis use, cannabis dependence, and any illicit drug dependence, our conditional logistic regression effects have broad confidence intervals that do not allow us to exclude important effects. A final potential limitation of the present analyses is our reliance on retrospective reports. Although prospective data would be ideal since it eliminates recall bias and increases the ability to test causal models, such data would take many years to collect, and retrospective reports are a useful alternative. The present analyses have several strengths and provide an important extension of previous work examining associations between substance use and educational attainment. First, by using twin pairs discordant for substance use/dependence, we were able to control for genetic and environmental confounds that might contribute to the association between substance use and educational attainment. Second, because our participants were in their late 30s when their educational attainment was assessed, we were better able to address lifetime educational attainment than are most previous studies, which have generally focused on high school dropout or educational attainment in 18-25 year-olds whose eventual educational level might not have been reached. Third, we examined educational attainment in a veteran cohort that had access to education via benefits of the G.I. bill, thereby alleviating some of the economic barriers to higher education. In conclusion, after controlling for genetic and environmental confounds that might contribute to observed associations, there remained evidence consistent with non-genetic associations between some substance use/dependence measures and educational attainment, but no support for a causal relationship between other substance measures and educational attainment. These findings lend credence to ongoing public health efforts to reduce adolescent smoking and drinking, which in turn may have beneficial effects on school dropout and lifelong educational attainment. However, the possibility that the association for alcohol and daily nicotine use is due to an unmeasured third variable needs further examination and replication in additional samples. 1 All adjusted models included four covariates: depression , conduct disorder , Southeast Asia service , and post-traumatic stress disorder ; no covariates were significant at p < .05. a The only significant interaction between zygosity and risk behavior was for daily nicotine use in the adjusted model , conditional logistic regression analyses were collapsed across zygosity for all measures except daily nicotine use ; b interaction OR=0.51 in the unadjusted model and 0.46 in the adjusted model
Background-Although substance use is associated with reduced educational attainment, this association may be due to common risk factors such as socioeconomic disadvantage. We tested whether alcohol, nicotine, and illicit drug use and dependence were associated with lifetime educational attainment after controlling for familial background characteristics. Methods-Data were from a 1987 questionnaire and a 1992 telephone diagnostic interview of 6242 male twins (n=3121 pairs; mean age= 41.9 years in 1992) who served in the U.S. military during the Vietnam-era, and therefore were eligible for educational benefits after military service. Reduced educational attainment (less than 16 years) was examined in twin pairs discordant for substance use history. Substance use and dependence risk factors assessed were early alcohol and cannabis use, daily nicotine use, lifetime cannabis use, and alcohol, nicotine, cannabis, and any illicit drug dependence. Results-Three significant differences were observed between at risk twins and their cotwins: Compared to their low-risk cotwins, likelihood of completing less than 16 years of education was significantly increased for: (a) twins who used alcohol before age 18 (adjusted OR=1.44; 95%CI: 1.02-2.05), (b) twins with a lifetime alcohol dependence diagnosis (adjusted OR=1.76; 95%CI: 1.27-2.44), and (c) twins who had used nicotine daily for 30 or more days (adjusted OR=2.54, 95%CI: 1.55-4.17). However, no differences in education were observed among twin pairs discordant for cannabis initiation, early cannabis use, or cannabis, nicotine, or any illicit drug dependence. Conclusions-Even in a veteran population with access to military educational benefits, early alcohol use, alcohol dependence, and daily nicotine use remained significantly associated with years of education after controlling for shared familial contributions to educational attainment.
Introduction Cigarette smoking contributes to numerous common diseases, including cancers, chronic obstructive pulmonary disease, and cardiovascular diseases, and it is one of the leading causes of death in the United States [1][2][3][4][5][6] . Despite the substantial decrease in cigarette smoking prevalence over the last one-half century, ~40 million people are still smokers in the United States, and disparities among smokers remain 7,8 . Higher prevalences of smokers have been observed in populations who are disadvantaged socially and economically 7,9 . Further, among smokers, socioeconomic status is a major determinant of the degree of nicotine dependence 10 , which can be approximated by the number of cigarettes smoked per day 11 . In the United States, smoking behaviors vary widely across race/ethnicity, with individuals of Asian and Hispanic/Latino ancestry having the lowest smoking prevalence compared to individuals of other ancestry 7,8 . The reasons for these disparities may include variation in genetic ancestry, which has the potential to explain variation in smoking behaviors between Asian and Hispanic/ Latino ancestry populations and other populations. However, to date, no study has investigated the role of genetic ancestry and smoking behavior-related traits. Twin and family studies suggest that genetic factors accounted for approximately half of the variance in smoking initiation and smoking quantity, and heritable variation in cigarette use seems comparable across ethnic groups [12][13][14] . Recently, the GWAS and Sequencing Consortium of Alcohol and Nicotine Use study 15 conducted in European ancestry individuals reported 467 genetic variants associated with cigarette smoking-related traits, including age at smoking initiation, smoking initiation, smoking cessation, and CPD. Here, we hypothesize that genetic ancestry may explain some of the wide-variability in cigarette smoking behaviors across ethnic groups. To answer this question, we conduct genetic ancestry analyses of cigarette smoking behaviors within each of the four ethnic groups from the Genetic Epidemiology Research in Adult Health and Aging cohort 16 . Two smoking-related traits were used: smoking initiation and CPD for all smokers . We then investigate whether genetic ancestry associations are: due to genetically determined smoking-related traits based on known smoking genetic variants 15 ; and modified by education, socioeconomic factors such as, employment/work status, household income, and marital status. --- Materials and methods --- Study population Individuals were selected from the Kaiser Permanente Research Program on Genes, Environment, and Health Genetic Epidemiology Research on Adult Health and Aging cohort. The cohort consists of over 110,000 adult members of Kaiser Permanente Northern California , ranging in age from 18 to 100 years at enrollment 16 . The RPGEH was established as a resource for research on genetic and environmental influences on health and disease, and participants were asked to complete a mailed survey. On this survey, participants were asked: 'What best describes your race/ethnicity?'. Briefly, and as previously described 16 , self-reported race/ethnicity for each individual was derived from responses to this question, and, for individuals who reported more than one category, the selections were collapsed into race/ethnicity categories. In particular, all East Asian nationalities were collapsed into a single East Asian group; all Latino nationalities were collapsed into a single Hispanic/Latino category; all African descent populations were collapsed into a single group; all white-European ethnicities were collapsed into a single non-Hispanic white group. In addition to self-reported race/ethnicity, individuals included in the current study provided self-reported information regarding their cigarette use, education, employment/ work status, household income, and marital status . All study procedures were approved by the Institutional Review Board of the Kaiser Foundation Research Institute. --- Smoking-related traits Two smoking-related traits were assessed based on the RPGEH survey, via the following questions: 'Have you ever smoked one or more cigarettes per day for six months or longer?' ; 'Do you currently smoke, or have you stopped smoking?' ; and 'On average how many packs of cigarettes do you smoke per day?'. For smoking initiation, ever and never smokers were assigned as cases and controls, respectively. For smokers , the number of CPD, as a quantitative trait, was assessed by considering ~20 cigarettes per pack. The RPGEH survey has been shown to be successful in assessing other substance use, such as alcohol consumption, as in our recent study 17 we confirmed previous findings implicating ADH1B, AUTS2, SGOL1, SERPINC1, KLB, and GCKR loci in alcohol consumption [18][19][20][21] . --- Socioeconomic covariates The RPGEH survey was also used to assess education, socioeconomic factors , and marital status, via the following questions: 'What is the highest level of school that you have completed?'; 'What is your employment or work status?'; 'What best describes your household income ?'; and 'What is your current marital status?'. Answers to these questions were combined in: 4 categories for education: 'less than high school' which corresponds to "grade school ", 'high school' which combines "some high school " with "high school or GED", 'some college', and 'college degree or more' which combines "college", "graduate school", and "technical/trade school"; 4 categories for employment or work status: 'full-time employed', 'part-time employed', 'unemployed' and 'disabled for work'; 3 categories for household income: '<$20,000' which corresponds to an annual household income <$19,999 per year, '$20,000 to $59,999/year', and '$60,000/year or more'; and 3 categories for marital status: 'never married', 'married or living as married', and 'separated or divorced'. 'Female' sex, 'college or more' education, '$60,000 or more' income, 'full-time employed' employment, and 'married or living as married' marital status served as the reference groups for Models 3. --- Genotyping and imputation GERA DNA samples were genotyped on four custom Affymetrix Axiom arrays that were designed for individuals of non-Hispanic white, East Asian, African American, and Latino race/ethnicity, as previously described 22,23 . We applied genotype quality control procedures for the GERA samples on an array-wise basis 23 . Briefly, we included genetic markers with an initial genotyping call rate ≥97%, genotype concordance rate >0.75 across duplicate samples, and allele frequency difference ≤0.15 between females and males for autosomal markers. Approximately 94% of samples and more than 98% of genetic markers assayed reached QC procedures. In total, over 665,000 genotyped single nucleotide polymorphisms 22,24 and over 15,000,000 imputed SNPs were available for analyses. The 1000 Genomes reference panel was used for imputation . --- Principal component and genetic ancestry Banda et al. 16 conducted an analysis of ancestry in GERA using PC analysis , and identified 10 and 6 ancestry PCs reflecting genetic ancestry among non-Hispanic whites, and the other ethnic groups, respectively. To adjust for genetic ancestry, we also included the percentage of Ashkenazi Jewish ancestry as a covariate for the non-Hispanic white ethnic group analysis. For genetic ancestry analyses, for each ethnic group, we examined the effect of the first 2 PCs, which are the only ones geographically interpretable and represent geographic clines, on smoking-related traits prevalence/distribution. Each model was adjusted for additional PCs . To visualize the smoking-related traits prevalence/distribution by the ancestry PCs, we created a smoothed distribution of each individual's smoking phenotype using a radial kernel density estimate, as previously described 25 . --- Genetic risk score To determine if known smoking-associated SNPs could explain the ancestry effect, we repeated the ancestry analyses including a GRS for each smoking-related trait based on the findings of the largest genetic study conducted to date, including up to 1.2 million individuals with information on multiple stages of tobacco use 15 . To derive the GRS, we used a 'classic' method 26 which consists of computing GRS based on a subset of SNPs exceeding a specific GWAS association P-value threshold . The first GRS was based on 365 smoking initiation genome-wide associated-SNPs associated-SNPs, and the second was based on 53 SNPs previously reported to be associated at a genome-wide level of significance with CPD 15 . Out of the 365 SNPs, 133 were confirmed to be associated with smoking initiation in GERA, including 14 at a Bonferroni-corrected alpha level of 1.37 × 10 -4 . Out of the 53 SNPs, 34 were confirmed to be associated with CPD in GERA, including 15 at a Bonferroni-corrected alpha level of 9.43 × 10 -4 . The GRSs were built on these known smoking-associated SNPs by summing up the additive coding of each SNP weighted by the effect size ascertained from the original study 15 . As the original study 15 was conducted in cohorts of European ancestry, we also generated unweighted GRSs and included those in the models for each ethnic group. Results were similar using unweighted or weighted GRS in all ethnic groups . --- Statistical analyses For smoking initiation, we used a logistic regression model to examine the impact of ancestry on this smokingrelated trait using R version 3.4.1 with the following covariates: age, sex, and ancestry PCs . For the number of CPD, we used a linear regression model. In Model 2, in addition to all covariates included in Model 1, we added one of the two GRS described above. In Model 3, in addition to all covariates included in Model 2, we added education, socioeconomic factors, and marital status as covariates. --- Results --- GERA cohort and smoking behavior The study sample consisted of 43,485 GERA participants from four ethnic groups . In our study, the prevalence of 'ever' smokers varied by ethnicity with the lowest prevalence for East Asians and the highest for non-Hispanic whites. On average, the number of cigarettes per day smoked by non-Hispanic whites was higher compared to the number of CPD smoked by individuals from other ethnic groups . 'Ever' smokers were more likely to be 'former' smokers compared to 'current' smokers in all ethnic groups. In our study, the prevalence of 'ever' smokers also varied by education level, employment, income level, and marital status . Individuals with high school education levels were more likely to have smoked compared to individuals with a college degree or higher education level . Individuals who were disabled were more likely to have smoked compared to individuals who were part-or full-time employed ), and individuals having an annual income of $60,000 or more were less likely to have smoked compared to individuals who had an annual income of <$59,999 . Finally, individuals who were separated/divorced were more likely to ever smoked compared to individuals who were never married . Similar trends were observed across the four ethnic groups . --- Genetic ancestry and smoking behaviors We first investigated genome-wide genetic ancestry using principal components that were assessed within each ethnic group separately 16 . Genetic ancestry associations with smoking initiation and CPD were then assessed and visual representations are provided in Figs. 1,2. Within non-Hispanic whites, the first two PCs represented geographically interpretable genetic ancestry, with PC1 characterizing a northwestern vs. southeastern European cline and PC2 a northeastern vs. southwestern European cline. The first two PCs were both associated with CPD , with the lowest prevalence observed for individuals of southeastern European ancestry . In contrast, neither PC1 nor PC2 was associated with smoking initiation within non-Hispanic whites. Within Hispanic/Latinos, the first two PCs were also geographically interpretable, with PC1 representing greater European versus Native American ancestry and PC2 representing greater African versus European ancestry. In Hispanic/Latinos, we observed higher smoking initiation prevalence and higher CPD correlating with greater European ancestry . In East Asians, PC1, which represents European admixture, was strongly associated with smoking initiation and nominally with CPD . For PC2, which differentiates geographical clines across East Asia, we observed a non-linear association between smoking initiation and PC2 . This non-linear association represents a U-shaped association of ancestry from north to south . Recently, we reported a similar pattern of ancestry association for body mass index in East Asians 27 . Significant associations were also detected between PC2 and CPD . In African Americans, neither PC1 nor PC2 were associated with smoking initiation or CPD . --- Genetic ancestry and known smoking-associated loci To determine whether the genetic ancestry associations with smoking-related traits were due to known smokingassociated loci, we repeated the ancestry analyses, including one of the two following GRS: the first GRS was based on 365 smoking initiation associated-SNPs, and the second GRS was based on 53 SNPs previously reported to be associated with CPD 15 . While the GRS for smoking initiation was significantly associated with smoking initiation in all four ethnic groups, the GRS for CPD was a predictor for CPD in all ethnic groups, except Hispanic/ Latinos . In non-Hispanic whites, the genetic ancestry associations between PC1 or PC2 and CPD were not attenuated after including the GRS for CPD . In Hispanic/Latinos, while the genetic ancestry association between PC1 and smoking initiation was not attenuated when including a GRS, the genetic association between PC1 and CPD was slightly attenuated . In East Asians, while the genetic ancestry association between PC1 and smoking initiation was not attenuated when including a GRS, the genetic ancestry association between PC2 and smoking initiation was slightly attenuated . Further, in East Asians, while the genetic ancestry association between PC1 and CPD was no longer significant when including a GRS, the genetic ancestry association between PC2 and CPD was slightly attenuated . --- Genetic ancestry associations and socioeconomic factors To determine whether education, socioeconomic factors, and marital status explain the remaining genetic ancestry associations , we repeated the ancestry analyses, including education, employment, income level, and marital status. In non-Hispanic whites, only the genetic ancestry association Note: In model 3, sex , education , income , marital status , employment served as the reference group. Each model was adjusted for age, sex, and additional PCs. We also included the percentage of Ashkenazi ancestry as a covariate for the non-Hispanic white analyses. CPD number of cigarettes smoked per day, PC principal component, β beta, SE standard error, GRS genetic risk score . between PC2 and CPD was attenuated after considering education, socioeconomic factors, and marital status . In Hispanic/Latinos, while the genetic ancestry association between PC1 and smoking initiation was not attenuated when considering education, socioeconomic factors, and marital status, the genetic association between PC1 and CPD was attenuated further but not eliminated . In East Asians, the genetic ancestry association between PC1 and smoking initiation was attenuated when considering education, socioeconomic factors, and marital status, and the genetic ancestry association between PC2 and CPD was attenuated further but not eliminated . --- Discussion In this study, we observed substantial differences in cigarette smoking behaviors across race/ethnicity groups, and we found that smoking initiation and/or CPD were associated with genetic ancestry within non-Hispanic whites, Hispanic/Latinos, and East Asians. Specifically, a higher smoking initiation prevalence and higher number of CPD were associated with greater European ancestry among Hispanic/Latinos and were associated with greater European ancestry among East Asians. Furthermore, individuals of northwestern European ancestry had a higher number of CPD compared to individuals of southeastern European ancestry among non-Hispanic whites. No significant associations between genetic ancestry and cigarette smoking behaviors were detected in African Americans, which was the smallest sample size of the groups. After considering genetic variants known to contribute to cigarette smoking behaviors and accounting for education, socioeconomic factors such as employment/work status and household income, and marital status, these genetic ancestry associations remained, but were attenuated. Study findings suggest that genetically determined smoking traits and socioeconomic factors can explain some of the ancestry effects in Hispanic/Latinos, East Asians, and non-Hispanic whites, and that additional factors correlated with genetic ancestry remain to be discovered. Our results are consistent with previous studies showing disparities in adult cigarette smoking prevalence among specific sub-populations, including individuals from certain ethnic groups, variation by education level, and socioeconomic groups. Indeed, we found that East Asian and Hispanic/Latino individuals had the lowest prevalence of smoking initiation compared to non-Hispanic white and African American individuals, consistent with the previous studies 7,28 . Similarly, in our study, the prevalence of these 'ever' smokers was much lower for college-educated individuals compared to those with high school education, and for individuals who earned >$60,000 compared to those with lower income, consistent with previous studies 7, [28][29][30] . Furthermore, in our study, married individuals had the highest prevalence of smoking cessation compared to those who were single or divorced, consistent with previous findings 31 . We recognize several potential limitations of our study. First, the cigarette smoking-related traits were based on self-reported information, and no information regarding other forms of tobacco use, such as pipes, cigars, or ecigarettes, were collected on our survey. Further, GERA cohort members are older on average compared to the general population. As older adults may consume tobacco in a different form than younger adults who may prefer ecigarettes 32,33 , this may limit the generalizability of the findings to the groups represented in this study. Second, no information regarding the previous U.S. addresses of the participants included in the current study was collected. All the GERA members were living in the Northern California region at the time of survey completion, however, as smoking prevalence has been shown to vary considerably across states 7,34 , considering the previous U.S. addresses of the participants could identify an additional potential source of variation in smoking behavior. Third, because of the limited number of 'current' smokers in our sample , we did not consider the smoking cessation phenotype for the subsequent genetic ancestry association analyses. Lastly, for the calculation of GRS for smoking-related traits, we used a 'classic' GRS method 26 that restricts to only genetic variants reaching genome-wide significance in the original GWAS 15 . This 'classic' approach has been commonly applied [35][36][37][38][39] and has key advantages 26 , including that it is relatively fast to apply and is more interpretable compared to more sophisticated methods, such as Bayesian regression models that perform shrinkage [39][40][41] . Further, this 'classic' approach has been shown to have relatively similar performance compared to alternative methods [39][40][41] . Future studies applying those alternative methods to derive GRS for smoking-related traits may provide a further refinement to the effects that we observed in the current study. Despite these limitations, our study is based on a unique and very large cohort of individuals, who were all members of the KPNC health plan, a single integrated healthcare delivery system. Participants were recruited in a similar manner and were assessed for their cigarette smoking behaviors using a single questionnaire providing greater consistency, in contrast to consortia which often include different questions across studies. In conclusion, this study is the first investigation of genetic ancestry and cigarette smoking-related trait associations. We observed significant associations between genetic ancestry and smoking-related traits within each race/ethnicity, except for African Americans. Known smoking-associated genetic variants identified in populations of European ancestry 15 explained only a small proportion of these associations, and the observed ancestry effects may be due to population-specific genetic variants. Future studies including additional genetic variants associated with smoking behavior-related traits in non-European populations, such as those recently identified in a Japanese population 42 but not validated yet, may better explain these genetic ancestry associations. --- Data availability Genotype data of GERA participants are available from the database of Genotypes and Phenotypes under accession phs000674.v2.p2. This includes individuals who consented to having their data shared with dbGaP. The complete GERA data are available upon application to the KP Research Bank . --- --- Supplementary information The online version contains supplementary material available at https://doi.org/10.1038/s41398-021-01244-7.
Cigarette smoking contributes to numerous diseases and is one of the leading causes of death in the United States. Smoking behaviors vary widely across race/ethnicity, but it is not clear why. Here, we examine the contribution of genetic ancestry to variation in two smoking-related traits in 43,485 individuals from four race/ethnicity groups (non-Hispanic white, Hispanic/Latino, East Asian, and African American) from a single U.S. healthcare plan. Smoking prevalence was the lowest among East Asians (22.7%) and the highest among non-Hispanic whites (38.5%). We observed significant associations between genetic ancestry and smoking-related traits. Within East Asians, we observed higher smoking prevalence with greater European (versus Asian) ancestry (P = 9.95 × 10 -12 ). Within Hispanic/Latinos, higher cigarettes per day (CPD) was associated with greater European ancestry (P = 3.34 × 10 -25 ). Within non-Hispanic whites, the lowest number of CPD was observed for individuals of southeastern European ancestry (P = 9.06 × 10 -5 ). These associations remained after considering known smoking-associated loci, education, socioeconomic factors, and marital status. Our findings support the role of genetic ancestry and socioeconomic factors in cigarette smoking behaviors in non-Hispanic whites, Hispanic/Latinos, and East Asians.
INTRODUCTION Economic growth in China has been accompanied by rising income inequality . In previous studies, income inequality was linked to the increased risks of cardiovascular disease mortality as well as risk factors in the United States , though not consistently in Europe or New Zealand . A concept related to income inequality is relative income deprivation . Growing inequality in the distribution of incomes will tend to widen the gap between the incomes of individuals, triggering stressful social comparisons, and an increased sense of relative income deprivation. Notably, the harmful effects of relative income deprivation can occur even in the absence of absolute income deprivation. For example, an individual may not be deprived in an absolute sense , and yet feel relatively deprived when one perceives that other people are overtaking, as income inequality widens. In turn, a growing sense of relative deprivation is hypothesized to be linked to the psychosocial stress, as well as maladaptive coping responses to stress, e.g., smoking, excess drinking, and binge snacking . Stress due to upward social comparisons may also give rise to more negative emotions , which are in turn correlated with the higher blood pressure . Relative income deprivation has been linked with ischemic heart disease mortality and/or incidence in the United States , the United Kingdom , and Japan . In China, most of the previous studies considered the effects of income and income disparity separately, with inconsistent findings for CVD and its risk factors . A Chinese study that examined both absolute and relative income found that income inequality is inversely associated with overweight but also with higher waist circumference in older adults . In addition, it found relative income deprivation to be positively correlated with hypertension in urban areas, but also inversely associated with overweight and waist circumference . To assess whether absolute or relative income affects cardiovascular health, and to clarify the relevance of the mechanism of cortisol, we used two complementary designs in Hong Kong, a rapidly developed Chinese setting with a wide income disparity . First, using an observational study, we examined the associations of absolute and relative household and neighborhood income with CVD and its risk factors in Hong Kong Chinese. Besides, we examined whether the association of relative household income deprivation with CVD and its risk factors was mediated by cortisol, a potential stress mechanism. Second, using a one-sample Mendelian randomization study, which is less prone to confounding due to proxying exposures by randomly assigned genetic variation , we assessed whether cortisol was associated with CVD and its risk factors in Hong Kong Chinese. Abbreviations: CVD, cardiovascular disease; GWAS, genome-wide association study; IHD, ischemic heart disease; MR, Mendelian randomization; PGS, polygenic score; SNP, single nucleotide polymorphism. --- MATERIALS AND METHODS --- Data Sources --- Observational and MR Studies in Chinese The FAMILY Cohort is a population-based household study in Hong Kong recruited from March 2009 to March 2014, as detailed elsewhere . It aims to promote individual and household health, happiness, and family harmony . A family living in the same household was used as the sampling unit, with all family members aged ≥10 years were eligible to participate. Based on the stratified random sampling, residential addresses were sampled in 18 Hong Kong districts, 19,533 Chinese participants were recruited as the random core sample. The study further recruited firstdegree relatives of this sample and oversampled three new towns, population subgroups, and certain districts, comprising 46,001 Chinese participants as the entire sample. Two household visits and five telephone-or web-based follow-ups were conducted in 2009-2014. The entire sample completed the first household visit in March 2009 to April 2011, and those aged ≥ 15 years were followed-up in the second household visit in August 2011 to March 2014. During household visits, eligible participants were asked to complete an interviewer-administered survey covering information on socio-demographics, lifestyle, and behavioral factors, health indicators and standardized instruments assessing health, and happiness and family harmony . Anthropometrics, body fat percentage, and blood pressure were measured by the interviewers. Height was measured by a Mobile Stadiometer Seca 214, USA; weight and body fat percentage were measured by a Body Fat Analyzer Scale Omron HBF-356 ; blood pressure, measured using an Omron HEM-7000, was the average of two measurements taken after at least 5 min of rest. A Biobank in the FAMILY Cohort was established in May 2016, targeting participants aged ≥ 8 years living in two districts . During the follow-up, nonfasting blood samples were collected in the morning or afternoon and then stored at -80 • C. For cortisol, serum samples were tested in an accredited laboratory . Deoxyribonucleic acid extraction from whole blood and MassARRAY genotyping were conducted at the Centre for PanorOmic Sciences of the University of Hong Kong. The DNA samples were analyzed using iPLEX MassARRAY system for genotyping candidate single nucleotide polymorphisms related to cortisol. Ethical approval for this sub-study was obtained from the University of Hong Kong/Hospital Authority Hong Kong West Cluster Institutional Review Board. Informed written consent was obtained from the participants before participation. --- Exposures Observational Study in the FAMILY Cohort Household Income Monthly average household income before tax reported by the head of household in wave 1 was recorded in 29 income categories . It was divided by the square root of household size to account for the proportional needs for shared commodities . --- Neighborhood Income Hong Kong is divided into small neighborhoods of residence called Tertiary Planning Units which represent clustered geographical units created for town planning purposes. Based on the 2011 Population Census in Hong Kong, there were 289 TPUs for which median monthly domestic household income was available. Each participant from the FAMILY Cohort was assigned to a TPU, and the associated neighborhood income, based on anonymous addresses recorded in wave 1. Household income and neighborhood income were mapped to absolute and relative income constructs as follows: • Absolute household income: equivalized monthly average household income. • Absolute neighborhood median income: TPU median monthly household income in quantiles . • Relative household income deprivation: measured by the Yitzhaki index , i.e., average difference in the equivalized household income between the index household and every other household with a higher household income in the comparison group . • Neighborhood income inequality: proxied by a TPU-specific Gini coefficient, a widely used indicator of income inequality ranging from 0 to 1 in quantiles . --- Outcomes --- CVD and Its Risk Factors Cardiovascular disease was based on the self-reported coronary heart disease, stroke, or other heart disease in wave 1. CVD risk factors were based on the self-reported diabetes, body mass index , body fat percentage, and systolic and diastolic blood pressure measured in wave 1. BMI was calculated from weight divided by square of height. --- Statistical Analysis For the observational study, we examined the associations of the four income measures with CVD and its risk factors using a fixed effects multilevel linear or logistic model. The beta coefficient or odds ratio with 95% CI for mutually adjusted associations accounting for individuals being nested within families and neighborhoods using intraclass correlations , adjusted for potential confounders is presented. While some other confounders, such as level of education, may exist for individual level income exposures, we used this more parsimonious set of potential confounders to fit consistent models across the household and neighborhood level income exposures we examined. In the mediation analysis, to obtain direct and indirect effects and the proportion mediated, we assessed the association of relative household income deprivation with CVD and its risk factors, such as cortisol, the interaction of cortisol with relative household income deprivation, and the potential confounders . --- MR STUDY IN THE FAMILY COHORT Exposures --- Selection of Candidate SNPs To identify genetic instrument of cortisol in the Chinese whom a genome-wide association study for cortisol is unavailable, we initially selected the 539 non-identical , biallelic SNPs suggestively associated with cortisol in any of the three existing cortisol GWAS in people of European descent with minor allele frequency in Chinese ≥ 0.05 based on 1,000 Genomes East Asian allele frequency. We further excluded correlated SNPs and SNPs that failed to assay design restricted to 3 multiplex assay groups and focused on SNPs with MAF > 0.30 in Chinese, giving 84 SNPs. After genotyping, quality control procedures were carried out by excluding samples with SNP call rate < 0.02; sample call rate < 0.02; MAF < 0.05; Hardy-Weinberg equilibrium p < 1 × 10 -6 ; sample heterozygosity rate outliers . Principal components were estimated based on the remaining 61 independent SNPs . --- Genetic Instrument for Cortisol We used an internally weighted polygenic score for logtransformed cortisol aligned on the cortisol increasing allele. The PRS was calculated by multiplying the genotype with internal weights, taken from the generalized least squares method accounting for kinship matrix , adjusted for age, sex, and the first 10 principal components. --- Statistical Analysis We obtained beta coefficients and 95% CIs for the association of the cortisol PRS with BMI, body fat percentage, and blood pressure using the 2-stage least squares . We obtained ORs for the association of the cortisol PRS with CVD and diabetes using the multiplicative generalized method of moments with bootstrapping with 1,000 replications to estimate CIs, given the variance of the error terms was heteroskedastic. We used the Hausman test to assess whether the 2SLS estimates differed from the linear regression estimates adjusted for age and sex and whether the MGMM estimates differed from the Poisson regression estimates adjusted for age and sex to which MGMM is equivalent. --- RESULTS --- Observational Study A total of 17,607 Chinese adults were included in the analysis, with more than half being women and born in Hong Kong . The average age was 44.0 years . The equivalized monthly average household income was HK$ 15,712 and the relative income deprivation was HK$ 8,685 , i.e., on average, a household had HK$ 8,685 less income than higher-income households. The mean BMI was 23.2 kg/m 2 , mean body fat percentage was 27.0%, and mean systolic/diastolic blood pressure was 125/78 mmHg. CVD was reported by 4.6% and diabetes by 6.5%. Table 2 shows the adjusted associations of income with CVD and its risk factors. When all income measures were considered together, after accounting for multiple comparisons, greater relative household income deprivation was associated with lower BMI but not with body fat percentage, as well as higher systolic but not diastolic blood pressure. Relative income deprivation was not associated with CVD or diabetes. Greater neighborhood income inequality was associated with lower BMI, after accounting for multiple comparisons. Higher absolute household income was associated with higher body fat percentage and higher absolute neighborhood median income was associated with lower blood pressure at a nominal level of statistical significance, but not after accounting for multiple comparisons. There were no other associations for absolute income at the household or neighborhood level, nor for the neighborhood income inequality. Table 3 shows the adjusted mediation analysis in those with cortisol measurement . Cortisol partially mediated the positive association of relative household income deprivation with systolic blood pressure at a nominal level of statistical significance, but not after accounting for multiple comparisons, whereas it did not mediate the association with diastolic blood pressure. The relative household income deprivation was not associated with BMI, body fat percentage, self-reported CVD, or diabetes. --- MR Study A total of 1,562 Chinese adults were included, with more than half being women and born in Hong Kong , as in the mediation analysis. The average age was 44.9 years . Mean cortisol was 8.2 ug/dl. Mean BMI was 23.5 kg/m 2 , mean body fat percentage was 27.3%, and mean systolic/diastolic blood pressure was 124/78 mmHg. The proportion with self-reported CVD was 3.6% and with self-reported diabetes was 4.7%. Table 4 shows the associations of cortisol with CVD risk factors using the linear regression and MR. Higher cortisol was associated with lower BMI, the nominal association with lower body fat percentage, and higher systolic blood pressure was not evident after accounting for multiple comparisons. Using an internally weighted PRS for the MR analysis , cortisol was unrelated to BMI, body fat percentage, and systolic and diastolic blood pressure. The linear regression and MR estimates did not differ based on the Hausman value of p. Table 5 shows the associations of cortisol with self-reported CVD and diabetes using the logistic regression and MR. Using an internally weighted PRS for the MR analysis , cortisol was not associated with self-reported CVD or diabetes. The logistic regression and MR estimates did not differ as indicated by the Hausman value of p. --- DISCUSSION Considering both absolute and relative income at the household and neighborhood level among the Hong Kong Chinese adults, we found little clear or consistent associations of either absolute or relative income with poorer adult cardiovascular health in Hong Kong Chinese, with the mediating role of cortisol remaining elusive. Both greater relative household income deprivation and greater neighborhood income inequality were associated with lower BMI. In addition, the relative household income deprivation was associated with the higher systolic blood pressure, but not with CVD, diabetes, body fat percentage, or diastolic blood pressure. Neighborhood income inequality was not related with CVD or other risk factors. In addition, the absolute income at the household and neighborhood level was unrelated to CVD and its risk factors. These findings are inconsistent with the studies showing that the state-level income inequality was positively associated with CVD and its risk factors in some , but not all , Western countries. However, the state-level income inequality has not always been found to be associated with CVD risk factors in the West and China , especially, after adjusting for the individual absolute income. Our associations of relative household income deprivation with lower BMI but higher systolic blood pressure in Hong Kong Chinese adults are consistent with a previous Chinese study , but in that study the relative income deprivation was also associated with higher nutritional intake and smoking. Our mostly null findings for neighborhood income inequality suggest that the effects of income disparities across neighborhoods might be context dependent. That is, any deleterious effects of income deprivation might be buffered in settings with the strong social infrastructure and resources. Hong Kong is an economically developed Chinese setting with extensive public transport, accessible and affordable public healthcare, free universal education, and a social safety net. Further, our associations of relative household income deprivation with the higher systolic blood pressure, but with lower BMI, are counter-intuitive. To explore the potential mechanisms that could underlie any effects of the relative income deprivation on cardiovascular risk, in a subset of participants, we examined the role of cortisol. However, cortisol did not mediate the positive association of relative household income deprivation with systolic blood pressure after accounting for multiple comparisons. Indeed, we found little evidence of a direct effect of cortisol levels on CVD, suggesting that there was no role for cortisol to mediate any association between income variables and CVD. These discrepancies might also reflect different physiological drivers of BMI and blood pressure. Observationally cortisol was associated with lower BMI, but it was no longer associated with body fat percentage or systolic blood pressure after accounting for multiple comparisons, whereas using MR, cortisol was unrelated to CVD, diabetes, or other CVD risk factors in Chinese, possibly due to the small sample. Three recent MR studies have suggested that cortisol is positively associated with IHD in Western countries . However, in the two studies by Crawford et al., the positive estimate was found using IHD from the UK Biobank , but other estimates had CIs including the null using IHD from the CARDIoGRAMplusC4D or the meta-analysis of the UK Biobank and CARDIoGRAMplusC4D , and in the other study by Pott et al., the sample was mainly patients with suspected or confirmed IHD , which is open to selection bias . Furthermore, our MR study in Westerners using more genetic variants for cortisol than those previous studies and found no association of cortisol with CVD and its risk factors . Replication using functionally relevant genetic variants for cortisol or conducting a meta-analysis of future MR studies on cortisol and CVD from China and elsewhere would help clarify the role of cortisol. Several limitations are noted. First, the monthly average household income was reported in income categories rather than exact amounts. Using 29 income categories enabled granular ranking of income differences considering the willingness of participants to report. Second, household disposable income, consumption, possessions, or wealth could be a more direct measure than gross household income but this is more difficult to measure and standardize. Third, relative income deprivation is open to uncertainty as to the actual comparison group. Colleagues, relatives, or friends could be a more proximate comparison group, but we did not have such information. Fourth, household income and cardiovascular risk outcomes were measured at the same time. Longitudinal assessment would provide clearer temporality. This also limited the ability to control for potential confounders of the relationship, so all presented findings are descriptive in nature. Fifth, household income, and some health outcomes, e.g., CVD and diabetes were self-reported and hence are subject to recall bias. Underreporting of household income and disease status is possible and might have attenuated the observed associations. Sixth, given this study focused on the overall association of income with cardiovascular health, we did not adjust for the traditional cardiovascular risk factors, e.g., smoking, physical inactivity, and other comorbidities in the observational analyses because they could be mediators rather than confounders. Seventh, candidate SNPs for cortisol in the Chinese were informed by GWAS in Westerners. Although we accounted for allele frequency in Chinese populations such that the SNPs had considerable genetic variation, the included SNPs may not all be relevant to cortisol among Hong Kong Chinese. Eighth, no genome-wide significant SNPs for cortisol in Chinese was identified, which is not unexpected given few have been found in Westerners. Larger, extensively genotyped GWAS for cortisol in Chinese in future would allow identification of more relevant SNPs for MR. Finally, we adjusted genetically predicted cortisol for age and sex but not for principal components because we used selected SNPs for cortisol not a full GWAS of the FAMILY Cohort. In summary, relative household income deprivation was not consistently related in a cross-sectional analysis to cardiovascular health in Hong Kong Chinese, nor were neighborhood income inequality and absolute income. The relevance of income deprivation seems to be contextspecific and the psychosocial mechanism underlying relative income deprivation, including the role of cortisol, is likely complex and remains to be elucidated. --- DATA AVAILABILITY STATEMENT The data analyzed in this study is subject to the following licenses/restrictions: the data that support the findings of this study are available from the FAMILY Cohort in Hong Kong but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. Data are however available from the authors upon reasonable request and with permission of the FAMILY Cohort. Requests to access these datasets should be directed to FAMILY Cohort, [email protected]. --- ETHICS STATEMENT The studies involving human participants were reviewed and approved by University of Hong Kong/Hospital Authority Hong Kong West Cluster Institutional Review Board. The patients/participants provided their written informed consent to participate in this study. --- --- Conflict of Interest: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. Publisher's Note: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher. Copyright © 2022 Kwok, Kawachi, Rehkopf, Ni, Leung and Schooling. This is an open-access article distributed under the terms of the Creative Commons Attribution License . The use, distribution or reproduction in other forums is permitted, provided the original author and the copyright owner are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
The associations between absolute vs. relative income at the household or neighborhood level and cardiovascular disease (CVD) risk remain understudied in the Chinese context. Further, it is unclear whether stress biomarkers, such as cortisol, are on the pathway from income to CVD risk. We examined the associations of absolute and relative income with CVD risk observationally, as well as the mediating role of cortisol, and validated the role of cortisol using Mendelian Randomization (MR) in Hong Kong Chinese. Within Hong Kong's FAMILY Cohort, associations of absolute and relative income at both the individual and neighborhood levels with CVD risk [body mass index (BMI), body fat percentage, systolic blood pressure, diastolic blood pressure, self-reported CVD and self-reported diabetes] were examined using multilevel logistic or linear models (n = 17,607), the mediating role of cortisol using the mediation analysis (n = 1,562), and associations of genetically predicted cortisol with CVD risk using the multiplicative generalized method of moments (MGMMs) or two-stage least squares regression (n = 1,562). In our cross-sectional observational analysis, relative household income deprivation (per 1 SD, equivalent to USD 128 difference in Yitzhaki index) was associated with higher systolic blood pressure (0.47 mmHg, 95% CI 0.30-0.64), but lower BMI (-0.07 kg/m 2 , 95% CI -0.11 to -0.04), independent of absolute income. Neighborhood income inequality was generally unrelated to CVD and its risk factors, nor was absolute income at the household or neighborhood level. Cortisol did not clearly mediate the association of relative household income deprivation with systolic blood pressure. Using MR, cortisol was unrelated to CVD risk. Based on our findings, relative household income deprivation was not consistently associated with cardiovascular health in Hong Kong Chinese, nor were neighborhood income inequality and absolute income, highlighting the context-specific ways in which relative and absolute income are linked to CVD risk.
Introduction This literature review addresses two important questions about family business research: what did we learn from the Journal of Family and Economic Issues articles published over the past decade; and where do we go from here. The JFEI articles have helped readers better understand family businesses by differentiating them from other types of businesses; explaining the unique interface between the family and the business; and identifying the characteristics for family business survival and success. This JFEI family business literature review was guided by an article by Yilmazer and Schrank . The reviews of published JFEI family business articles were driven by the notion that an understanding of the family and the business is critical in the understanding of the sustainability of family businesses. Looking forward, family business researchers have the opportunity to better understand the impact of community resources and climate; more carefully assess the challenges of women, minorities, and immigrants; understand the role of cultural capital; and explore the impact of innovation during rapidly changing times, such as those created by the pandemic. The guest editor assigned 20 articles on family business published between 2010 and 2019 for this review. The scholars generating this research were from universities, government agencies and businesses throughout the US. Ten of the twenty papers were authored by members of the North Central Region's Agricultural Experiment Station Project on family business. Those research faculty members were from land grant institutions throughout the central and western US. Nearly all of the authors were applied economists in agricultural economics, family or consumer economics, family business, or family resource management. The 20 published JFEI articles helped readers identify the attributes of the family and the business that are important for family business survival and success. While a substantial body of the family business literature has been generated by business faculty, this literature goes beyond the traditional business approach by integrating researchers from social sciences, including: family and social scientists, sociologists, psychologists, family economists, and others into the discussion. The strength of the JFEI literature is the innovative ideas that have come from the research of scholars from several disciplines. For additional information on authors, disciplines, and affiliations see Appendix Table 1. The JFEI family business articles made substantial contributions to research on family businesses by utilizing high-quality secondary data, innovative primary data, and established theoretical and conceptual frameworks. The family business articles published in JFEI used eight high quality secondary datasets. They were: 1) American Family Business Survey, 2) National Family Business Survey, 3) Spatial Hazards and Losses Data for the US, 4) Survey of Consumer Finances, 5) National Minority Business Owners Survey, 6) Intergenerational Family Business Survey, and 7) Survey of Household Finances in Spain, and 8) Arthur Anderson Center for Family Business Survey. In addition, primary data on family businesses, including farms, were used in studies in the United States, United Kingdom, Norway, India, and Australia. Nationally representative samples were available to researchers using the American Family Business Survey, National Family Business Survey, Spatial Hazards and Losses Data for the US, Survey of Consumer Finances, National Minority Business Owners Survey and Survey of Household Finances in Spain. Of the 20 articles reviewed in this paper, 15 were based on quantitative research followed by three on qualitative research, and two were literature reviews. Fourteen established theoretical and conceptual models used by the authors, include the following: 1) Sustainable Family Business Theory , 2) Agricultural Household Model , 3) General Systems Theory , 4) Technology Acceptance Model , 5) Diffusion of Innovations Framework , 6) Strategic Management Framework , 7) Social Exchange Theory , 8) Financial Satisfaction Framework , 9) Farming Satisfaction Model , 10) Role Theory , 11) Fundamental Interpersonal Relations Orientations , 12) Dynamic Capabilities Approach , 13) Unified Systems Model , and 14) Family Resource Management . These papers have addressed several important concepts, including disruptions, survival and success, and adoption strategies. For instance, the concept of disruption covers changes in farm programs to substantial weather events, such as Hurricane Katrina; success covers objective measures, such as changes in profits to subjective measures, such as asking the respondent if they believed they were successful. Adoption strategies consider responses to changes by family business owners, such as hiring additional help, an adjustment strategy, to adopting new technologies. While selected articles refer to households and others refer to families, these terms are synonymous in these studies. They refer to businesses owned or managed by family members related by birth, marriage, or adoption. For additional information on methods, theories, concepts, and frameworks see Appendix Table 2. The JFEI family business articles summarize issues representing four topical areas: household and business economics, business continuity and succession, managerial and adoption strategies, and values and goals. The household and business economics topic covers cash flow problems, profit growth, perceived business success, savings behavior, survival duration, and ownership profitability, satisfaction, and perceived well-being. Business continuity and succession topics include continuation commitment, daughter succession, and entrepreneurial skill succession. Topics in the managerial and adoption strategy category include adjustment strategies, capital usage, and innovative technology adoption. The values and goals section addresses value orientation, goal orientation and performance, dynamic capabilities, and considerate exchange. --- Household and business economics The household and business economics literature recognized the importance of conducting holistic analyses when considering family business. A literature review by Yilmazer and Schrank provided an important foundation for examining resource flows between the family and business. This article carefully distinguished between bootstrapping from the small business finance literature and intermingling from the household and family firm literature in small and family-owned businesses. The authors concluded that both bodies of literature, taken individually, were not sufficiently comprehensive to fully capture the financial flows between the household and business and the factors that affect their utilization. The authors suggested that these two groups of research studies intersect and their merger would enable business and household finances to be more holistically understood for family businesses. --- Family business response to cash flow problems The foundation provided by Yilmazer and Schrank was important in the development of a research study by McDonald and Marshall , which used Sustainable Family Business Theory and Intergeneration Family Business Survey data. McDonald and Marshall examined family business resource transfers and tensions to determine how the household and the business respond to cash flow problems. The authors found that cash flow problems increased resource tension in both the household and the business. When faced with family cash flow problems, the business did not transfer more funds to the household either because the business owner was unable or unwilling to transfer more funds to the household. When faced with business cash flow problems, family businesses responded by allocating less cash to the household. These results suggest that family businesses held on to financial resources to help the business, rather than the household. --- Profit growth and perceived business success Positive business or household cash flow depends on the generation of business profits or other financial resources. A study by Lee et al. , using the SFBT and National Family Business Survey, examined gender differences in profit growth. Most importantly, this study found that female managers had higher levels of perceived business success and more profit growth than their male counterparts. For female managers, health status and business size were positively related to profit growth, while business liabilities and home-based location were negatively related to profit growth. Even though female managers had higher profit growth, they had lower levels of human and financial capital than their male manager counterparts. --- Savings behavior Family businesses depend on profit and household savings to increase their net worth. The purpose of the study by Remble et al. was to examine household saving behavior and the influence on a family-owned business. This study, using the 2007 Survey on Consumer Finances and life-cycle earnings model, focused on the savings behavior of business-owning and nonbusiness-owning households. The study showed that business-owning households were more likely to save than nonbusiness-owning households. The results of this study indicate that household saving behavior was influenced by both characteristics of the respondent and the household. When considering different types of businesses, the authors found that farm and nonfarm business owning households were more likely to save than other households. When considering only businessowning households, the study revealed that farm households had significantly different and more positive saving behavior than nonfarm households. In addition, they found that having more human capital or financial capital increased the likelihood of household savings among familyowned businesses. 1 3 --- Survival duration Profit growth and savings are critically important for the long-term survival of family businesses. Stafford et al. examined the factors affecting long-term survival of family businesses in the United States. They used the SFBT to guide the long-term survival model and employed the National Family Business Survey and Spatial Hazard Events and Losses for the US databases. This study introduced important rigor into the survival analysis of family business by using a longitudinal sample of family businesses and controlling for community environment, family and business capital, management processes and disruptions external to the firm, such as a natural disaster. They found that family businesses that provided more income from their families, hired more temporary help, owned larger businesses, and had more experience had increased duration of survival. Home-based businesses, female owners, and those using customer-centric management strategies had decreased duration of survival. Most importantly, they found that businesses in more economically vulnerable rural areas and businesses owners who considered their business a "way of life" had increased duration of survival. Both of these results planted seeds for future research as family businesses in economically vulnerable rural areas and those owners considering their business as a "way of life" were posited to have decreased, rather than increased duration of survival. This study provided further evidence that a family business does not make economic decisions in social isolation. Stafford et al. emphasized that many factors other than objective measures, such as money, are important to survival of family businesses. Subsequent research introduced other factors, such as relationships among owners , perceived financial solvency, and perceived resource well-being that were important for survival and success, especially for female owners and managers. --- Ownership and relationships The interface between the family and business becomes increasingly important when two or more family members are active in the business. McDonald et al. , using the SFBT and Intergenerational Family Business Survey, examined small and medium-sized rural copreneurial businesses and the relationship between their business structure, relationship satisfaction, and profitability. In this case, the important resource is labor because two business owners work in the family business. This research showed that couples who self-select into working together as copreneurial business owners do so based on how satisfied they are with their relationship. The findings suggest that to have higher profitability, the copreneurial couple should place importance on maintaining relationship satisfaction within the business and in the family. --- Ownership and satisfaction While copreneurs are often men and women owners, gender of the owner is an important consideration in family business because women often have dual responsibilities for the business and household. The purpose of the study by Archuleta et al. , using role theory and primary data from Kansas farmers, was to explore factors that impacted farm women's perceptions of farm business financial satisfaction. The most important contributions were the following: being financially solvent, a subjective measure, was positively associated with farm business financial satisfaction, and occupying a decision-making role was negatively associated with farm business financial satisfaction. Neither household income nor percentage of agriculture income, both objective measures, were significantly associated with farm business financial satisfaction. --- Ownership and perceived well-being While an economic model would suggest that more money is better than less, Archuleta et al. found that household income or percentage of farm income were not associated with financial satisfaction. In the same vein, another family business research study using the family resource management model and primary data from daycare providers, found that research on family child care providers had similar findings, namely that household income predicts little about how providers perceived their overall resource well-being . They found that perceived resource well-being was related to more subjective measures, such as past and present economic situations, demands on time, contributions providers' family members make to support the business functions, and quality and availability of community resources, rather than more objective measures, such as household income. --- Business continuity and succession Successful family businesses often choose to pass the family business onto the next generation. For some potential heirs, especially daughters, there are many challenges. The literature published by the JFEI is largely literature reviews or data driven, rather than based on any theory or conceptual framework; however, these articles provided important insight into the succession of family businesses. Mahto et al. , using the Arthur Anderson Center for Family Business Survey survey of top executives, examined the factors that influence continuation commitment, or the family's commitment to continue the family business. They found that the top executive's age and generation , number of family owners, number of family meetings, and social identity were positively associated with the continuation commitment, while more education was negatively associated with the continuation commitment. In addition, the top executive's future performance expectation was positively associated with the continuation commitment. --- Continuation commitment Unless there is a continuation commitment from family it is unlikely that the business will continue in the same family. Merchant et al. , examined business continuity using a sample of very small businesses in India. The aim of this study was to identify and validate factors that affected family business succession for small and medium-sized enterprises in India. The authors found that the two major drivers having the greatest positive impact on successful continuation for these Indian family businesses were willingness and excitement of the potential successor to join the business and ability of the founder and successor to manage tensions. --- Daughter succession While many family business owners are concerned about succession of the business, small business owners may be specifically concerned about their children following in their footsteps. Wang used a content analysis of previous literature to examine daughter succession in family businesses. This paper was driven by the notion that daughters are often forgotten or overlooked in family business succession. This paper presented various aspects of how gender inequality has been explained in the family business succession literature, and highlighted four areas of daughter succession in family business: exclusion of daughters, barriers to daughters' succession in family business, daughters' pathways to leadership and control, and the implications of the daughter option. The authors found that overlooking the potential of daughters as successors to a business would leave sub-optimal choices for successions, and also exclude daughters from involvement in the family business. --- Entrepreneurial skill succession Family involvement in a business may encourage the involvement of a daughter or son. Ferrando-Latorre et al. examined relationships within Spanish families to determine if children of entrepreneurs were more likely to become entrepreneurs. This study, using the Survey of Household Finances in Spain, found that children of entrepreneurial or self-employed parents were more likely to become entrepreneurs or self-employed than children of wage and salary employees. They found that transmitting entrepreneurial skills and values between generations was an important process in the transmission of entrepreneurship. --- Managerial and adoption strategies Family business survival and success depends on the ability of the family and business entities to respond to major shocks . Adjustment strategies included financial choices, such as choosing risky or less risky investments, employment of family or business labor, and or using time resources or financial capital . In this set of articles, family structure was an important determinant of the adjustment strategies chosen. Adoption strategies of the family and the business impacted by the tobacco buyout in 2005 and 2006 were studied by Pushkarskaya and Marshall utilizing two theoretical frameworks, i.e., agricultural household model and SFBT, and primary data from Kentucky tobacco producers. The results showed that family structure did have an impact on expenditure choices and adjustment strategies following a shock to the family business. For instance, younger, married farmers were more averse to starting a new venture compared to other household structures; couples with young children were less likely to choose the stock market for investment than an older couple living with their younger generation family; and the stock market was an investment choice for families who had experienced a family death. --- Adjustment strategies While changes in financial choices are important adoption strategies, adjusting behaviors in either the business or family system are important to accommodate the needs of the other systems when unusually heavy demands exist. The use of adjustment behaviors during high-demand times creates a resilience capacity that tends to automatically take effect when encountering a disruption. Five adjustment types occur at the family-business intersection: reallocating personal time, obtaining additional help, adjusting family resources, adjusting business resources, and intertwining tasks . Lee et al. used the 2003 and 2005 National Minority Business Owners Surveys and SFBT to compare male and female minority business owners in their overall use of adjustment strategies. They found that minority female business owners were more likely to reallocate family resources to help with business tasks and were more likely to intertwine both family and business tasks than minority male business owners when demands were particularly great for the family or the firm. Unlike in majority cultures, where male and female business owners may not differ in their use of adjustment strategies, in minority-owned small family firms, gender differences existed in adjustment strategy use. In particular, minority female business owners in this study were more likely to solicit unpaid help for their businesses and adjust family resources to meet business demands, than were minority male business owners. --- Women and minority adjustment strategies --- Capital usage Other adjustment strategies require changes in the use of other resources apart from time, labor, or money. Glover examined how family farm businesses use different forms of capital to respond to critical changes in the family and business using Bourdieu's theory of capital. In this study, based on case studies of farmers in the United Kingdom, Glover found that levels of economic capital were adversely affected when there is lack of contingency planning. However, both social and symbolic capital were important in assisting family members to cope and continue the family business. This study provided qualitative evidence that in adverse situations, business and family support one another to function smoothly and sustain the operation. --- Innovative technology adoption Innovative adjustment strategies include the adoption of new technologies. Niehm et al. provided new insights regarding the benefits of integrated information technology use for small family firms. This study was based on Davis et al.'s Technology Acceptance Model and Rogers' Diffusion of Innovations framework, and utilized data from the National Family Business Survey. This study found that prior IT knowledge and the degree to which IT was used in the business had the strongest impact on technology adoption, followed by community size, access, and affordability of related technologies. The findings suggested that family firms were able to successfully implement and gain advantages from IT only after the business managers perceived its usefulness and developed technology capabilities. --- Values and goals While survival and success are important to family businesses, the underlying value orientation and goals and family business dynamics are important in enabling family businesses to survive and succeed. --- Value orientation An important study by Distelberg and Blow used the American Family Survey and a dual General Systems Theory and Eco-systems perspective to explore the congruency of goals and values and how they influence perceptions of success; how the family business's resources and goals are appraised differently based on the family business's value orientation; and how unity in values supersedes value orientation regarding the functioning of the family business. They found that value orientations were not correlated with sales, satisfaction, or perceptions of success. However, they did find that value orientations have an effect on the value that owners assign to goals and resources. And, they found that individuals in a family business were more satisfied with their business when personal values were consistent with the values set for the business. --- Goal orientation and performance Following the lead of Distelberg and Blow , Lee and Marshall investigated the relationship between goal orientation and family business performance using the strategic management framework and the 1997 and 2000 National Family Business Surveys. More specifically, the authors were interested in determining the effect of goals on long-term success in family businesses. They found that two goals had a positive influence on longterm business performance: a positive reputation with customers and business growth. --- Dynamic capabilities Family business growth requires that the business remain competitive. Duarte Alonso et al. addressed three areas of need in family businesses, related to what family businesses do to adapt to a rapidly changing business environment, and the specific resources leveraged to remain competitive in this context. The authors studied the dynamic capabilities in the context of the family business, using the dynamic capabilities theoretical framework with primary data from Australia. Dynamic capabilities support capacities such as sensing new opportunities, seizing these opportunities by mobilizing resources, and transforming or reconfiguring business structures and assets for renewal. This study found that family businesses adapt to a changing business environment by embracing innovation to add value and efficiencies. In addition, to remain competitive, these firms leverage specific resources, such as unique firm attributes, an open culture, signature processes and idiosyncratic knowledge. --- Considerate exchange Adapting to a changing business environment assumes that family members are able to agree that changes are needed. Successful succession of a family business requires family interactions. Gezelius , using social exchange theory and a sample of 580 Norwegian farmers, clarified the concept of considerate exchange and extended the capacity of social exchange theory to explain interactions among close relatives of family-owned businesses. Considerate exchange essential states "I care for you, because you care for me." This study found that considerate exchange enables family members to allocate scarce resources while sustaining and strengthening emotional ties that build well-being within the dynamics of the family and the business. In addition, this study suggests how considerate exchange may be useful to explain business dynamics and how exchange plays out, without damaging relationships. --- Conclusions The JFEI literature has added substantial breadth and depth to the family business literature; so what did we learn? Based on suggestions by Yilmazer and Schrank , household and business economic research in the JFEI explored the importance of cash flow, profitability, and savings in supporting family business well-being, satisfaction, success, and survival. Business continuity and succession are important to many successful family businesses. The JFEI literature examined the importance of family member commitment, inclusion of daughters in the succession plan, and technical skills in successfully transitioning a business to the next generation. A successful business transition often requires the family businesses to quickly adopt new strategies to rapidly changing conditions. The JFEI literature explored adjustment strategies employed by women and minority family business owners during hectic times; and, considered the importance of capital use and innovative technologies in managing the firm. Successful management strategies are supported by individual, family, and business values and goals. The JFEI literature assessed the importance of individual values and goals, dynamic capabilities of the business owner, and considerate exchange among family members in supporting a successful family business. Most importantly, the JFEI articles, utilizing theories and conceptual frameworks from several social science fields, have helped readers understand the importance of including both the family and business in any discussion of a family business. --- Future research The 20 JFEI articles have examined family businesses through several theoretical lenses, most notably economics, sociology, family science, and psychology. These approaches have provided a broad base for understanding family business by recognizing the importance of considering the impacts on the family and business. While an extensive body of literature has been created over the past decade, significant research opportunities remain for JFEI authors. Previous studies have profiled family businesses and examined their short-and long-term survival and success. Here are seven areas for substantive future research on family businesses: Fitzgerald et al. , Yilmazer andSchrank , andMcDonald andMarshall provide important foundations for examining resource flows between the family and the business. Ample room exists to further study the implications of the financial interactions between households and businesses as both systems seek to adjust to these risks. Stafford et al. In conclusion, JFEI articles have the opportunity to bring family business research from throughout the world to the academic marketplace. While family business research may employ less familiar theoretical or conceptual constructs, interesting datasets and empirical analyses provided a glimpse into the challenges faced by family businesses. The research and information on family businesses in JFEI offers a plethora of opportunities to future researchers and continues to educate the public on important family business matters. Throughout our review of JFEI family business research, much has been discovered, and the journal will continue to make substantive contributions to the literature by addressing the vexing challenges facing family businesses. 1 Topic areas: 1 = household and business economics, 2 = business continuity and succession, 3 = managerial adoption strategies, and 4 = values and goals Table 1 Planning to exit tobacco farming , planned to use tobacco payment to expand the business , planned to start new firm , at least one adult family member was employed off-farm , planned to spend their tobacco payments mostly on household expenses , planned to pay off debts using tobacco checks , and planned to invest in the stock market --- --- Ethical Approval Statement This paper is a literature review study. The Montana State University Institutional Review Board has confirmed that this study is exempt; hence, no ethical approval is required. --- Appendix See Tables 1 and2.
This paper reviews articles published in the Journal of Family and Economic Issues (JFEI) from 2010 to 2019 and considers future research opportunities. The JFEI articles utilize theories and conceptual frameworks from several social science fields, to help readers understand the importance of including both the family and business in any discussion of family businesses. The literature review addresses four family business topical areas: (1) household and business economics, (2) business continuity and succession, (3) managerial and adoption strategies, and (4) values and goals. These JFEI articles have focused on differentiating family businesses from other types of businesses; explaining the unique interface between the family and the business; and identifying the characteristics (i.e., demographics, adjustment strategies, continuity, capitals, and values and goals) for family business survival and success. In the future, family business researchers have the opportunity to better understand the impact of community resources and climate; more carefully assess the challenges of women, minorities, and immigrants; understand the role of cultural capital; and explore the impact of innovation during rapidly changing times, such as those created by the pandemic.
INTRODUCTION Indonesia is a prosperous country with various cultures and animals. Multidimensional and multireligious, marked by more than three hundred ethnicities, each ethnicity has its own culture using more than two hundred and fifty languages spread throughout the archipelago . This identity then grows and develops and is preserved as an identity both by ethnics and tribes in Indonesia . This identity can be in language, clothing, farming methods, or traditional games developed from local community knowledge. Because of these many local identities, Indonesia is often called a megadiversity country with the most diversity globally; no other country has matched it. This pride must be passed down from generation to generation, confident in the culture that has become the legacy of their ancestors. Preserving culture is, of course, closely related to the word form and culture itself. It is in the perception of being, a state, and trying to understand the meaning of something . Traditional games can be an alternative to develop social skills and also as a means to preserve national heritage . Traditional games are born and developed as activities regulated by a rule of play according to culture in each area to get joy for the community, especially children. . As for the nature of traditional games, they can be categorized into three forms: to play, compete and be educational . Each type and form of play must contain elements of education. This is a form of education that is non-formal in society. This type of game is a socialization tool for children to adjust to being members of their social group. Traditional games come from our ancestors and are passed down from generation to generation . Traditional games are one of the elements of culture; they are also considered cultural assets used as capital for the community to maintain its identity and existence amid other community groups. In ancient times the game was used as entertainment to achieve pleasure. --- METHODS Indonesia is a prosperous country with various cultures and animals. Multidimensional and multireligious, marked by more than three hundred ethnicities, each ethnicity has its own culture using more than two hundred and fifty languages spread throughout the archipelago . This identity then grows and develops and is preserved by ethnics and tribes in Indonesia . This identity can be in language, clothing, farming methods, or traditional games developed from local community knowledge. Because of these many local identities, Indonesia is often called a megadiversity country with the most diversity globally; no other country has matched it. This is a pride that must be passed down from generation to generation, confident in the culture that has become the legacy of their ancestors. Preserving culture is, of course, closely related to the word form and culture itself. It is in the perception of being, a state, and trying to understand the meaning of something . Traditional games can be an alternative to develop social skills and also as a means to preserve national heritage . Traditional games are born and developed as activities regulated by a rule of play according to culture in each area to get joy for the community, especially children. . As for the nature of traditional games, they can be categorized into three forms: to play, compete and be educational . Each type and form of play must contain elements of education. This is a form of education that is non-formal in society. This type of game is a socialization tool for children to adjust to being members of their social group. Traditional games come from our ancestors and are passed down from generation to generation . Traditional games are one of the elements of culture; they are also considered cultural assets used as capital for the community to maintain its identity and existence amid other community groups. In ancient times the game was used as entertainment to achieve pleasure. , abending/bom/boy, massage, Mareba Kaleng, and keto-tattoo. However, the traditional game that is very well known is mappasajang, mini, mappagoli, sobbed-sobbed, and katto-katto. --- The existence of traditional games in Tana Luwu is still quite good. Despite traditional games being quite good, the respondents in this study reveal that the popularity of these traditional games decreased along with increasingly modern developments. With the development of science and technology, playing games can be done anywhere without having to prepare game tools, facilities, and infrastructure that can be played on a computer. Laptops can even be played with cell phones. The data in Table 2 shows that of the 100 respondents, millennial children who are in Tana Luwu still know and even often play traditional games that are still often played by millennial children, namely sobbed-sobbed , mini , Chatto-Chatto and mappagoli . The younger generation still plays the game because there are traditional games where some games are similar to sports, which have rules the game; these games can also provide fun, relaxation, excitement, and challenges. . --- CONCLUSION Based on the research results, it can be concluded. First, the presence or existence of traditional games in Tana Luwu is quite good; this can be seen from the level of recognition of these traditional games. Several traditional games are very well known, up to 98%, and are the highest recognition of the millennials, and some are not familiar with the game, up to 17%. Second, traditional games are often played by young people, the highest at 54% and the lowest at 24% of those who have never played these games. Thus, it needs support from all parties so that traditional games are still known and played because they can be used to strengthen the younger generation's character.
Traditional games are part of the nation's rich and varied cultural heritage, including the conventional games of Tana Luwu. However, with the development of technology and modern lifestyles, traditional games among millennials in Tana Luwu are being threatened. Therefore, this study aims to analyze the Tana Luwu traditional game among millennials as a national cultural heritage. This study used a quantitative descriptive method with data collection techniques through interviews and observation. The results show that the level of recognition of traditional games is still quite good; some are even known by 90% of the respondents. At the same time, the frequency of young people playing these traditional games is the highest played by young people at 54%. Therefore, more severe and sustainable efforts are still needed to strengthen the Tana Luwu traditional game among millennials as part of the nation's cultural heritage. This can be done through education, development, and appropriate technology to facilitate access and promote the traditional game of Tana Luwu to millennials. The results of this research can contribute to preserving the conventional Tana Luwu game as a national cultural heritage among millennials and using the right technology to facilitate access and promote the traditional game of Tana Luwu to millennials. The results of this research can contribute to preserving the conventional Tana Luwu game as a national cultural heritage among millennials and using the right technology to facilitate access and promote the traditional game of Tana Luwu to millennials. The results of this research can contribute to preserving the conventional Tana Luwu game as a national cultural heritage among millennials.
INTRODUCTION Like any other type of violence , violence against women is a human behavioral disorder . Despite being mostly derived from psychological issues and thus requiring therapy, this disorder is considered almost "normal" in some cultures . Several studies to date have shown reported VAW to be more prevalent in societies with low socio-economic and education levels . Although its prevalence varies depending on the level of development and the cultural characteristics of a society, it has been reported that 35% of women around the world have experienced some form of violence, whether physical, emotional, economic or sexual, in their lifetime . A rapid increase in the prevalence VAW has been witnessed in Turkey, especially over the last 10 years , and many contributing factors have been identified, from jealousy to economic issues, although all of these factors seek to attribute violence to an excusable cause. Violence, however, is primarily a behavioral problem that needs to be fixed. It is well known that human behaviors, as well as individual characteristics , are shaped by one's culture . Cultures develop out of common beliefs, values and behaviors, among which, behaviors are the most visible aspects of a culture. Behaviors manifest within the mutual interactions of humans, and just as cultures produce behaviors, behaviors also produce cultures. It's clear that the behaviors of men and women interact in a society and create culture together in the process. Unfortunately, VAW is often seen as "ordinary", especially in the lower socio-economic and less educated segments of society in Turkey, and is frequently normalized in such Turkish proverbs as "If you don't beat your daughter, you beat your knee" , "The husband both loves and beats" and "Roses bloom where the husband hits". To understand the causes of violent behavior among men, it is necessary to comprehend the cultural characteristics of the society in question, and the opinions, attitudes and behaviors of women toward violence. Accordingly, the present study seeks to understand the opinions, attitudes and behaviors of women toward violence against women, and to examine the associated socio-demographic factors affecting the issue through a study of women living in a developing city in Türkiye. --- MATERIAL AND METHODS This cross-sectional study was conducted among women registered with a family health center clinic in the Kars province of Türkiye. The outpatient clinic from which the data were garnered is located in the center of the city, but provides services to people from across the metropolitan area meaning that the beneficiaries were homogeneous socio-economically. The data were collected in compliance with ethical standards, and the Kafkas University Medical Faculty Ethics Committee approved the study . No appropriate sample size was calculated, as all women who agreed to participate in the study were included in the survey . The survey questions were prepared based on a Turkish report on the subject of domestic violence against women . The data were collected over a period of three months through face-to-face interviews, conducted in a private room to ensure the confidentiality of the respondent, and began after the respondent had been informed about the study and had given verbal informed consent for their participation in the study. As all of the respondents had been registered with the same doctor in the same family health center for a long time, there was a close relationship and a high level of intimacy between the doctor and the respondents, and this served to increase their trust in the researcher, and to answer the questions sincerely. The questionnaire forms were responded to in full by all the respondents. A10-item questionnaire form was used to assess the socio-demographic characteristics of the respondents, after which a 5-item questionnaire form comprising closed-ended questions was used to identify exposure to violence of any kind , and whether the respondent had been exposed to domestic gender-based violence in their birth family. The women were also asked if they had divorced due to violence. The types of violence encountered by the respondents were examined in four categories: physical violence, emotional violence, economic violence and sexual violence . Physical violence was categorized as either moderate or severe, with moderate physical violence defined as slapping, throwing objects, pushing or pulling hair; while severe physical violence was defined as striking with a fist or object, kicking, dragging, beating, choking, burning or threats of use, or actual use, of a weapon, such as a gun, knife, etc.; Emotional violence was defined as insults, swearing, humiliation in front of others, scare tactics, threatening behavior and threats of physical violence; Economic violence was defined as prevention from working, forcing the person to quit their job, not give money for household expenses and depriving of income; and Sexual violence was defined as the use of physical force to have sexual intercourse and intercourse without consent . The present study, besides addressing the issue of physical violence, examined also the emotional, economic and sexual violence encountered by women living in a developing region of Türkiye. As almost all of the victims of physical violence in the study were exposed also to economic, emotional and sexual violence, and almost at the same rate, only the prevalence of physical violence was analyzed based on the yes/no responses of the respondents. To evaluate the opinions of VAW among the respondents, one simple question was asked: "Is violence acceptable to women?", which produced five common answers: "never acceptable", "it depends on the situation", "maybe some moderate physical violence", "on rare occasions" and "no idea". The attitudes of the women were then evaluated with the question, "When faced with violence, what do/did you do?", which also produced five common answers: "hide from everyone", "ask for legal aid", "ask for help from a family member", "ask for help from friends" and "separate immediately". To evaluate the behavioral dynamics of the women who had been subjected to violence, the open-ended question "Why do you remain in a violent relationship?" was asked, producing four common answers: "social pressure", "for the children", "for economic reasons" and "due to dependence on the relationship". The respondents were divided into two groups based on the mean age of the sample ; and into three groups based on their education level, as: no formal education/elementary school; secondary school/high school; and university and above. In the analysis of the data, the education level variable was based on none/high school and university/above, employment status was defined as either unemployed or employed, and marital status was defined as married or living with a partner, and others . Women who had been single throughout their lives were excluded from the study. The relationship duration variable was based on the mean duration of the relationship of the respondents . The economic status variable was based on the stated monthly family income, and statistical evaluations of economic status were based on the average monthly income for a family of four, divided for the analysis into a set of two variables based on the poverty line , leading to groups ≤$800 and >$800. The number of children value was dichotomized as ≤two and >three, based on the mean number of children . Statistical Analysis: The SPSS Statistics Version 20.0. was used for the data analysis. Descriptive statistics were expressed and examined as percentage distributions, frequencies, arithmetic means and standard deviations . Depending on the type of variable , the characteristics of the respondents were expressed as mean and SD, or frequencies and percentages. For the comparison of variables, Pearson's Chi-square and Fisher's exact tests were used. The odds ratio values were calculated between the categorical variables for risk evaluation and a 95% confidence interval of the OR values was also determined. The threshold for statistical significance was set at p<0.05. --- RESULTS The study group was aged 17-83 years and 11.5% of the respondents reported currently having no partner . The relationship duration of the study group ranged from 1-51 years , and 73.6% of the respondents had been married for more than 20 years, while 18.6% had been in their relationship for less than 5 years. The education levels of the respondents were 67.2% none/elementary school, 18.6% secondary school/high school, and 14.2% university/above; while the education level of the respondents' partners were 49.3% none/elementary school, 32.8% secondary school/high school, and 17.9% university/above. The proportion of the respondents in the study group reporting a monthly family income below $800 was 63.9%, and the proportion of women in work was 29.5%, while 71.6% had an employed partner. Of the total, 26% of the respondents stated that they worked with their partners in agriculture as seasonal workers. The mean number of children in the study group was 2.53 . A total of 56.8% of the respondents had ≥2 children and 13.7% of the respondents had no children. Of the total, 71% of the women reported being economically dependent. Table 1 presents a summary of the socio-demographic data of the study group. The proportion of the respondents who had encountered physical violence was 71.7% . No women reported exposure to choking, burning, or threats of, or actually, use of a gun, knife or other weapon among those exposed to physical violence. Of the total, 72% stated that they had been exposed to emotional violence, 76.8% to economic violence and 64.7% to sexual violence. The proportion of women exposed to domestic violence in their birth family was 76.2% in the study group, and the vast majority of women who were exposed to physical violence had also been exposed to domestic violence in their birth family . Among the victims of physical violence, the rate of economic violence was 99.2%, the rate of emotional violence was 98.7% and the rate of sexual violence was 73.1%, indicating that almost all of the women who had been exposed to physical violence had also been exposed to economic, emotional and sexual violence in the study group. The responses of the participants when asked their opinions of domestic violence were, in order, "never acceptable" , "it depends on the situation" , "possibly some moderate physical violence" , "on rare occasions" and "I have no idea" . When asked how they responded to such violence, the most common answers from the respondents were, in order, "I hide from everyone" , "I turn to my family for help" , "I turn to friends for help" " "I seek legal help" and "I separated immediately" . All of the women who stated that they had "separated immediately" were already divorced in the study group. When asked "why do/did you remain in a violent relationship", the responses of the appropriate respondents were "social pressure" , "for the children" , "for economic reasons" and "dependency on the relationship" . A significant relationship was identified between physical violence and age, with a higher rate of physical violence reported in the ≤45 years age group. There was also a significant relationship between duration of marriage of less than 5 years and physical violence, while no significant relationship was identified between the level of education of the respondents and exposure to physical violence, although the rate of physical violence was relatively lower among the women with higher education levels. In contrast, the rate of physical violence was significantly higher among women whose partners had a low level of education, and a significant relationship was also found between economic status and physical violence, with the rate of physical violence being significantly higher in the low-income group. An analysis of the relationship between employment status and physical violence revealed that women with unemployed partners were subjected to significantly higher rates of physical violence, while no significant relationship was identified between unemployment in women and physical violence. A statistically significant relationship was detected between physical violence and the number of children, as the rate of physical violence was significantly lower among the respondents with three or more children. The rate of physical violence was also low among the economically independent respondents, although this difference was not statistically significant. The relationships between socio-demographic characteristics and physical violence are presented in Table 1. Among the higher educated, economically independent, employed, relationship duration less than 5 years and younger age women groups, the level of the response "violence against women is never acceptable" was close to statistical significance. The older age and three or more children groups were significantly associated with the response "violence could be acceptable in certain situations". The less educated, low family income and economically dependent women groups said that they remained in violent relationships due to "social stigma", to a significant degree. In the economically dependent and low family income women groups, the respondents stated that they remained in their violent relationships due to the "children" to a significant degree. The response "for reasons of economy" to the question "why you remain in a violent relationship" was significantly higher in the low family income, three or more children, and economically dependent groups. A significant relationship was also identified between the response "I hide the violence from everyone" and the older age, low family income and economically dependent groups. Significantly more women seek legal aid among the well-educated and economically independent women groups when violence is encountered. Among the younger age, relationship duration of less than 5 years and welleducated women groups, the response to physical violence of "separated immediately" was higher, to a statistically significant degree. The results of a comparative analysis of the socio-demographic characteristics of the respondents and their opinions/attitudes/behaviors toward violence against women are broadly presented in Table 2. The risk of physical violence was 2.328 times higher in the ≤45 years age group than in the ≥46 age group. The risk of physical violence was 1.532 times greater among the respondents in relationships for fewer than 5 years. A relatively low educational level of the partner meant a 2.981fold increase in the risk of physical violence. The risk of physical violence was 2.974 times greater in women with an unemployed partner; and a low family income increased the risk of physical violence 3.152-fold . It was further observed in the present study that having two children or less increased the risk of physical violence 1.526-fold . --- DISCUSSION This study's results showed that a large proportion of the women in the study sample had been subjected to physical violence. A significant association was identified between a younger age, a relatively short relationship duration, a low educational level of the partner and low family income and physical violence against women. This concurs with the findings of earlier studies reporting a decrease in the risk of physical violence with older age, and identifying a low economic level as a risk factor for violence . As is the case in the rest of the world, Türkiye is experiencing an economic recession and an increase in youth unemployment, exacerbated by the fact that Türkiye's population is considerably young . The north-eastern Region of Türkiye ranks below the national average in all socio-economic criteria , and cultural habits are maintained here more intensely than in other Anatolian regions. All the above factors could contribute to the higher rate of VAW among the respondents in the present study. It has been reported in several studies around the world that economic and socio-demographic factors play a leading role in the prevalence of VAW . Women with low educated, unemployed partners and with a low family income were found to be exposed to significantly higher rates of violence in the present study, and the economic dependency of women was one of the main factors identified preventing women from escaping abusive relationships. In an examination of the risk factors associated with VAW in the present study, greater risk was identified in the low family income, low-educated partner groups. It is well known, however, that, regardless of the societal level, it is not only men with a low level of education and a low economic level who commit violence against women . Although no statistically significant relationship was identified in the higher educated, economically independent and employed women groups, these groups reported a lower rate of physical violence, which suggests that if women are well educated and participate in the labor force, they are better able to shield themselves from exposure to violence. There have been several studies to date reporting that it is the intimate partner that is the most frequent perpetrator of VAW . To examine the cause of male violence, an integrated model was developed by Heise in 1998 that was revised in 2011, proposing that intimate partner violence is influenced by interconnected factors at four different levels: individual , relationship/interaction , community , and macro-social . In this widely accepted model, the influence of culture on IPV is clearly observable. Anthropological studies view violence as a part of human behavior that can become normalized by an underlying cultural logic . To understand "how violence is affected by cultural factors", it is important to understand the ideology of masculinity in a society. The hegemonic masculinity in Türkiye promotes the domination and control of women by the male sex. VAW is mostly an expression of power that is encouraged by other men, and even elderly women, as men may otherwise suffer humiliation among their peers. This compelling role ascribed to men can also be a burden and an undesired situation for men. As stated by Fulu et al., violence is a compensatory action in men when they feel that their authority is waning, and unemployed and financially embarrassed men may project their masculinity as a means of compensating for failure . The reconstruction of the cultural concept of a society in which violence is tolerated is only possible through education and the enactment of long-term social policies. It is clearly apparent that there is a need to change and transform the cultural infrastructure related to VAW in the long term. The increased violence against women in Türkiye is certainly worrying, but we believe it is inevitable given the declining economy and also the lack of progress in education. That said, the increase in VAW can be attributed to multidimensional elements, and not only to education, economy and culture. Understanding the effects of the opinions, attitudes and behaviors of women toward VAW on the violent behaviors of men requires follow-up cohort studies, which falls outside the scope of the present study. The aim of the present study was to determine the frequency of VAW and to garner data on the opinions, attitudes and behaviors of women on the subject of VAW through a small group analysis. The cross-sectional nature of the present study served to identify some significant relationships between risk factors and physical violence, but failed to reveal any casual relationships. Understanding the reason for the dramatic increase in VAW in Türkiye, especially over the last 10 years, will require multidimensional research. The strength of the present study lies in the fact that all of the respondents were given the opportunity to express their opinions candidly, and to explain their approaches and responses to violence in their personal lives. They had no fear of repercussion when describing their experiences due to the assured confidentiality, and this intimacy facilitated in-depth interviews and ensured high reliability in the findings. Future studies should include a qualitative study to gain a better understanding of the context and causes of violence against women. The findings of the present study offer clear evidence that the lives of women are not easy in this region. If we are to improve women's lives, promote their participation in social life and increase community development, VAW must be given greater emphasis and subjected to academic study in all of its dimensions. To the best of our knowledge, this is the first study to date of this issue to be conducted in this specific region, and in this country. As the study was not based on a nationwide sample from Türkiye, the results cannot be generalized for the country as a whole. --- Conflict of Interest: The authors declare no conflict of interest.
Objective: Violence against women is a global humanitarian problem. The present study evaluates the opinions, attitudes and behaviors of women living in the Kars province of Turkey toward violence against women, and analyses the socio-demographic factors that influence both physical violence, and the opinions, attitudes and behaviors of women toward such violence. Methods: This cross-sectional research was conducted with 183 volunteer women aged 17-83 years who benefited from healthcare services in a family health center clinic in the Kars province of Türkiye. The survey questions were prepared based on a Turkish report on domestic violence against women (2014). Results: Of the women in the study sample, 71.7% had been subjected to physical violence (41.3% moderate physical violence and 30.4% some form of severe physical violence), and a younger age (p<0023), relatively short relationship duration (p<0.041), low educational level of the partner (p<0.029) and low family income (p<0.002) were all found to significantly increase the risk of physical violence against women. Low family income in particular increased the risk of physical violence 3.152-fold. Women with a higher level of education and with greater economic independence, those in employment and those in the relatively younger age group (≤45 years) mostly considered violence against women to be "never acceptable". Furthermore, the women who sought legal aid when exposed to violence by their partners were predominantly in the well-educated and economically independent groups, to a significant degree. Conclusions: Culture, education and economic status are the main risk factors for violence against women. Multidimensional studies are required to better understand the root causes of such behaviors..
| INTRODUCTION Up to 30% of children between the ages of five and six are involved in bullying . Bullying involvement is commonly defined as the behavior of three groups of peers with an imbalance of power between them: perpetrators, targets, and those taking up both roles, who are referred to as perpetrator-targets . Perpetrators are assertive and use aggressive and/or hostile behavior toward relatively powerless peers instrumentally to attain a goal . Their behavior is manifested in physical, verbal, material, relational, or cyber forms. Targets are characterized as submissive, rejected, and withdrawn, who face difficulties with defending themselves during negative peer experiences . Perpetrator-targets share characteristics of both targets and perpetrators . Whereas pure perpetrators use goaloriented proactive aggression, perpetrator-targets however often exhibit aggressive and impulsive behavior in response to their victimization . They might target relatively powerless peers to restore their social status after being victimized . As children's involvement in bullying can leave detrimental marks in various developmental aspects across childhood, adolescence, and young adulthood , it is crucial to understand the determinants of bullying involvement. In early childhood, when family members are key role models and main socializing figures , the first signs of bullying involvement are already visible . Represented by the social cognitive theory , behavior exhibited during bullying involvement may be learned from observing one's parents. Specifically, parental discipline provides key socializing moments for children's learning of moral reasoning and disengagement . For example, children who receive harsh discipline after misbehaving may learn that aggression is an acceptable way to achieve a certain outcome . In early childhood, when children have few other social circles that could buffer against adverse modeling influences, harsh parenting is an environmental factor to which children are vulnerable and susceptible . Harsh parenting is characterized by coercive acts, harsh and punitive discipline, and negative emotional affect, such as "yelling, frequent negative commands, name calling, overt expression of anger, and physical threats and aggression" . Harsh parenting is linked to all three bullying involvement roles. Aggressive and coercive parenting has been associated with bullying perpetration and victimization . In a meta-analysis, focusing on targets and perpetrator-targets, Lereya et al. reported that both were more likely than those uninvolved in bullying to be exposed to harsh parenting. In addition, the meta-analysis by Nocentini et al. underscored the associations between harsh parenting on the one hand and traditional and cyber-forms of bullying and victimization on the other. Although not all studies have assessed linkages between harsh parenting and all three types of bullying involvement roles in one and the same study, overall, there appears to be consensus in the literature that harsh parenting is associated with a higher likelihood of involvement in all three roles of perpetrator, target, and perpetrator-target. The present study is driven by our interest in this pattern. How can it be that the same maladaptive parenting practices are linked with all three distinct bullying involvement roles? In this study, we aim to explain the relations between harsh parenting and three bullying involvement roles. We argue that these linkages are conditional upon children's inhibitory control levels. --- | Child inhibitory control as a moderator Inhibitory control is part of the self-regulatory executive function, and refers to the ability to stop or modulate behavioral responses and to control impulses . Intact inhibitory control is necessary for suitable social information processing . Impairments in inhibitory control could lead to challenges in the cognitive steps that are needed for appropriate behavior , and result in disruptive, impulsive, and physically inappropriate behavior . Of the five cognitive steps needed for appropriate behavior, two are highly relevant in the context of our research question: "perception of stimuli" and "response selection" . At the step of perception of stimuli, children with higher levels of inhibitory control problems are more likely to attribute hostile intent to ambiguous social situations and more likely to select aggressive responses . From experiencing harsh parenting, children may learn that aggression is an acceptable behavior either to imitate or to endure . Depending on inhibitory control levels, experiencing harsh parenting could contribute to inappropriate coping, either as imitating learnt aggression or enduring such aggression within peer circles. Children may learn from harsh parenting that using aggressive behavior against a relatively powerless person who "deserves" it is appropriate . Children who have higher levels of inhibitory control problems may show less inhibition of impulses in response to parental harshness and instead reply with more aggressive and hostile responses . The rationale is that children who have higher levels of inhibitory control problems deal with their parents' harshness by an outward expression of their frustrations, and are more likely to imitate physical or verbal behavior experienced during harsh parenting situations . Consequently, they might be more likely to choose hostile and/or aggressive ways of communication in peer interactions, and to perceive a weaker peer as someone who can be blamed. We therefore hypothesize that for children who have higher levels of inhibitory control problems harsh parenting will predict perpetrator behavior . In contrast, children with relatively lower levels of inhibitory control problems can show sufficient inhibition of their impulses which prevents them from responding aggressively to parental harshness. However, as a result of repeated harsh parenting, the child may develop cognitive schemas that perceive the parent as controlling and threatening and the self as helpless and defeated . Children who can inhibit their impulses to some extent then take up a passive role, by exhibiting "compulsively compliant" responses when they learn that they are "powerless vis-à-vis the parent" . In conflict situations with peers, the child may activate these cognitive schemas which give rise to behavior that makes the child a target for bullying . Thus, we hypothesize that for children who have relatively lower levels of inhibitory control, harsh parenting will predict being victimized . We take an exploratory approach to investigate how children's inhibitory control problems may moderate the relationship between harsh parenting and showing perpetrator-target behavior. As aforementioned, perpetrator-targets share characteristics with both perpetrators as well as targets. A combination of the above explanations could illustrate how the effects of harsh parenting on the perpetrator-target role can differ by inhibitory control problem levels. However, given the lack of theoretical foundations for how inhibitory control might moderate linkages between harsh parenting and perpetrator-target behavior, no a priori hypotheses were formulated. --- | The importance of differentiating between parent and child sex Most of the studies that explored the effects of harsh parenting on children's bullying involvement focused on the role of mothers or "primary caregivers" . Given the vast amount of literature on the importance of studying both paternal and maternal parenting effects on child outcomes , we explore the impact of mothers' and fathers' harsh parenting on bullying involvement. Studies find that same-sex modeling is more common than opposite-sex modeling . Despite changing gender roles in modern society , for boys it is traditionally more acceptable to model hostile behavior of their father, while for girls, aggressive behavior is less accepted . Consequently, we expect that same-sex modeling will be more common, but solely for father-son dyads. --- | The current study We studied to what extent linkages between harsh parenting and bullying involvement differ by child inhibitory control problem levels. We hypothesized that harsh parenting would more likely lead to being the target of bullying when children have lower level problems with inhibitory control, and that harsh parenting would more likely lead to perpetrator behavior when children have higher levels of inhibitory control problems. For perpetrator-targets, we took an exploratory approach. Furthermore, we explored the impact of parent and child sex on these linkages. We expected to find the strongest linkages between paternal harsh parenting and boys' bullying involvement, as compared to maternal harsh parenting and girls' bullying involvement. --- | METHODS --- | Procedure, design, and study population This project is embedded in the Generation R Study, a multiinformant population-based prospective cohort in Rotterdam, the Netherlands . Recruited through midwives and obstetricians, pregnant women with an expected delivery date be- or inhibitory control were excluded, leaving a completecase sample of 2131 families with information on all measures of harsh parenting, inhibitory control, and bullying involvement. We compared the complete-case sample with the sample that also allowed missings on harsh parenting and inhibitory control . Families in the latter sample had a lower household income and included younger and lower educated mothers and fathers than the complete-case sample . See Figure S1 in the Supporting Information Appendix for details on attrition. --- | Instruments --- | Harsh parenting Mothers and fathers self-reported on six harsh parenting items from the Parent-Child Conflict Tactics Scale at child age three = 36.44 , range 33.98-47.25). Ten items were selected from the original CTSPC scale , including items from the Nonviolent Discipline scale HOGYE ET AL. | 143 , the Psychological Aggression scale , Minor Assault scale , and Severe Assault scale . From the original Minor Physical Assault scale, three items were excluded from the Generation R study , as they are illegal practices in the Netherlands . Furthermore, an ageinappropriate question from the Psychological Aggression scale was excluded . Cotter et al. found preliminary support for the CTSPC scale's reliability and convergent validity. Parents rated the prevalence of harsh parenting in the past two weeks on a 6-point scale from "never" to "five times." Due to the low frequency of responses in the "twice," "three times," "four times," and "five times" categories, we combined these into "twice or more" for analyses . An exploratory factor analysis on the disciplining practices assessed in the Generation R cohort sample showed that six out of the ten assessed items loaded onto the harsh discipline construct for both mothers and fathers. The present study included those six items: I shook my child, I shouted or screamed angrily at my child, I called my child names, I threatened to give a slap but I didn't do it, I angrily pinched my child's arm, and I called my child stupid or lazy or something like that. A continuous weighted scale was created to sum up the frequency of the six harsh parenting practices, ranging from 0 to 12, which allowed for two missing items per case. A higher score indicates more frequent and varied harsh parenting. --- | Bullying involvement Teachers reported on their student's bullying involvement at age six = 77.38 , range 51.60-119.70) in elementary schools in Rotterdam during the past three months. The measure included four bullying and four victimization items . Out of the eight items, four referred to physical, verbal, relational, or material bullying, and four items analogously referred to victimization. Physical bullying was defined as hitting, kicking, pinching, or biting. Verbal bullying was defined as teasing, laughing at, or calling names. Relational bullying was defined as excluding other children, and material bullying was defined as hiding or breaking the belongings of another child. Teachers rated the items for each child on a four-point scale indicating bullying involvement: "almost never," "around one-to-three times per month," "around oneto-two times per week," or "more than twice per week." In line with Perren and Alsaker's definition, we classified children as perpetrators when they bullied others at least "one-to-three times per month" on at least one bullying item and when they had not been victimized on any of the four items in the past three months. Children were classified as targets of bullying when they were victimized at least "one-to-three times per month" on at least one item and when they never bullied others on any item. Children were classified as perpetrator-targets when they bullied others at least "one-to-three times per month" on at least one item and when they also were victimized at least "one-to-three times per month" on at least one item. Children were classified as uninvolved in bullying when they have never bullied others and were never victimized on any item . In the current sample, the items measuring bullying behavior and victimization had Cronbach's alphas of .73 and .64, respectively. The relatively low levels of internal consistency for both the bullying behavior and victimization items were to be expected as each item taps into different types of bullying behavior and victimization. --- | Inhihbitory control Inhibitory control was measured using the Behavior Rating Inventory of Executive Function in Preschool Children when children were four years old = 48.49 , range 47.05-60.77). The Inhibit scale of the BRIEF-P taps into parental expectations of their child's ability to modulate and inhibit inappropriate responses, actions, and behavior . Mothers rated 16 items using a 3-point scale, ranging from "never or not at all" to "often or clearly." We created a weighted, continuous scale ranging from 0 to 48, which allowed for two missing items per case. A higher score indicates increased problems in inhibitory control. The Inhibit scale in BRIEF-P has been shown to have good internal consistency and convergent validity . In the current sample, the scale had good internal consistency with Cronbach's alpha being .88. --- | Covariates Based on previous studies showing associations with harsh parenting and bullying involvement , we included child sex and age as covariates. Information on highest attained maternal and paternal educational level, household income, and parents' and their parents' country of birth, which were used to define parents' ethnicity, were all collected via prenatal questionnaires. --- | Analyses All analyses were carried out using IBM SPSS Statistics version 25 . Using multiple imputations with fully conditional specification, we imputed missing data on mothers' and fathers' educational level and household income. Missing values were imputed based on the observed values of the independent variables, covariates measured prenatally, marital status measured prenatally, as well as the socioeconomic covariates measured at age three and six years. Marital status was added to the step of the multiple imputations to improve the imputed values for socioeconomic covariates. Based on the highest percentage of missing values , we generated 31 datasets . We report the pooled results for all regression analyses. All main analyses were conducted on the complete-case sample consisting of 2131 children, for whom we had complete data on bullying involvement, maternal and paternal harsh parenting, inhibitory control, and imputed data on covariates. We performed multinomial logistic regression analyses with a stepwise approach to investigate our research aims. We meancentered all continuous variables. By taking a stepwise approach, we initially modeled the relations of mothers' and fathers' harsh parenting with the odds of being a perpetrator, a target, and a perpetrator-target, with the reference category being uninvolved in bullying. These associations were adjusted for covariates. Only covariates that meaningfully changed the effect estimates were included in the model. As parents' ethnicity did not change the effect estimates, we removed these variables from our analyses. In the second model, we added child inhibitory control. In the third model, we added an interaction between mothers' harsh parenting and child sex. In the fourth model, we tested the interaction between mothers' harsh parenting and inhibitory control. In the fifth model, we included three separate two-way interactions, and the three-way interaction between mothers' harsh parenting, child sex, and inhibitory control. In the sixth, seventh, and eighth models, we tested the same two-way and three-way interactions with fathers' harsh parenting as in the third, fourth, and fifth models respectively. To elaborate on significant interactions, we conducted additional multinomial logistic regression analyses where the moderator were centered at ± 1 SD . --- | RESULTS --- | Population characteristics Child and family characteristics are presented in Table 1. We classified 12.9% of the children as perpetrators, 4.2% as targets of bullying, 10.7% as perpetrator-targets, and 72.2% as uninvolved. Fewer girls than boys were classified as perpetrators, targets, and perpetrator-targets. Girls experienced less harsh parenting than did boys. Based on the highest 20% of the harsh parenting scale score , 27.4% of boys and 23.6% of girls experienced harsh parenting by one parent, and 13.1% of boys and 6.5% of girls experienced harsh parenting by both parents. Correlations between study variables can be found in the Supporting Information Appendix . We investigated the associations between harsh parenting, inhibitory control, and the odds of children being involved in bullying as perpetrators, targets, and perpetratortargets, with the reference category being uninvolved in bullying. The results of the models we discuss below are adjusted for child and family covariates. In the Supporting Information Appendix we report all models. There we also report sensitivity and nonresponse analyses. --- | The odds of being a perpetrator Among direct associations, the odds of being a perpetrator were associated with fathers' harsh parenting and inhibitory control , but not with mothers' harsh parenting. Inhibitory control did not moderate the associations between harsh parenting and being a perpetrator, and neither did child sex. No three-way interactions between harsh parenting, inhibitory control, and child sex were found. --- | The odds of being a target of bullying The odds of being a target of bullying were not directly associated with harsh parenting, nor with inhibitory control. While inhibitory control moderated the relations between mothers' harsh parenting and the odds of being a target of bullying , child sex was not a significant moderator. The threeway interaction between mothers' harsh parenting, inhibitory control, and child sex was significantly associated with the odds of being a target of bullying . The graphical representation of how the association between mothers' harsh parenting and the odds of being a target differs by the three inhibitory control groups per child sex is presented in Figure S2 in the Supporting Information Appendix. To investigate how the magnitude and direction of the moderation of mothers' harsh parenting by inhibitory control varied by child sex, we probed the three-way interaction using two approaches, namely by analyzing simple slopes and by using the Johnson-Neyman technique . Simple slopes analyses revealed conditional associations between mothers' harsh parenting and victimization . For boys with lowerlevel problems with inhibitory control , mothers' harsh parenting was related to an increase in the odds of being a target . For boys with higher-level problems with inhibitory control , mothers' harsh parenting was related to a decrease in the odds of being a target . For girls, mothers' harsh parenting was not related to being a target of bullying . --- | The odds of being a perpetrator-target The odds of being a perpetrator-target were not directly associated with harsh parenting, but they were significantly associated with inhibitory control . Inhibitory control did not moderate the relation between harsh parenting and the odds HOGYE ET AL. | 145 of being a perpetrator-target. Child sex moderated the associations between mothers' harsh parenting and the odds of being a perpetrator-target . Moreover, the three-way interaction between mothers' harsh parenting, inhibitory control, and child sex was associated with the odds of being a perpetrator-target . The graphical representation of the relation between mothers' harsh parenting and the odds of being a perpetrator-target by the three different inhibitory control problem groups per child sex can be found in the Supporting Information Appendix . To explore how the b Low educational level refers to no or primary education. c Intermediate educational level refers to secondary or vocational education. d High educational level refers to Bachelor's degree, university-level education. e Income below social security level. f Income higher than modal income. magnitude and direction of the moderation of the association between mothers' harsh parenting and the odds of being a perpetratortarget by inhibitory control varied by child sex, we analyzed simple slopes and regions of significance . Simple slope analyses revealed that for girls with higher level inhibitory control problems, mothers' harsh parenting was significantly associated with an increased odds of being a perpetratortarget (OR higher inhibitory control problems = 1.21, 95% CI = 1.05-1.40; OR lower inhibitory control problems = 1.02, 95% CI = 0.83-1.25). For boys, mothers' harsh parenting was not significantly associated with the odds of being a perpetrator-target . --- | DISCUSSION We investigated whether the relations between maternal and paternal harsh parenting and three bullying involvement roles differed by child inhibitory control and sex. Partially supporting our hypotheses, our results show that fathers' harsh parenting increased the odds of being a perpetrator unconditionally of inhibitory control, while the relations between mothers' harsh parenting and the odds of being a target and a perpetrator-target differed by child inhibitory control and sex. --- | Perpetrator behavior Fathers' harsh parenting increased the odds of being a perpetrator, but we did not find this relation for mothers. Our findings are consistent with studies that reported relations between negative and harsh parenting and increased child aggression and bullying , as well as studies that found effects for fathers' harsh parenting on aggression and cyberbullying . The finding that inhibitory control problems increased the odds of being a perpetrator is consistent with previous reports on inhibitory control being related to externalizing problems and aggression . Contrary to our expectations, inhibitory control did not moderate the relationship between harsh parenting and the odds of being a perpetrator. Our results imply that situations in which fathers exhibit harsh parenting are likely to be key socialization moments, in which children learn to model physically or verbally inappropriate behavior . The fact that we only found direct and unconditional linkages with fathers', and not mothers', harsh parenting, could reflect on the measurement of harsh parenting in this study. Our harsh parenting measure taps into the frequency of this behavior, with mothers reporting slightly more harsh parenting than fathers. If the frequency of harsh parenting was all that mattered, we would most likely have seen unconditional associations for mothers' harsh parenting. Our results therefore suggest that, in addition to frequency, other aspects of harsh parenting, such as its perceived justness, might contribute. In the study by Alampay et al. , taking into account frequency, fathers', but not mothers', perceived justness of punishment was positively related to child-reported aggression. This finding is in line with our rationale that children learn from their parents that hostility is appropriate when this is justified as such . Children's perception of the justness of parental harshness may vary by the parent's sex, which might lead children to process harsh parenting differently. Alampay et al.'s findings also suggest that children may perceive fathers' harsh parenting as more just and deserved than that of mothers. This might explain why we only found unconditional effects for fathers' harsh parenting and only on the likelihood of being a perpetrator. --- | Victimization Fathers' harsh parenting was unrelated to the odds of being a target of bullying. The relation between mothers' harsh parenting and the odds of being a target of bullying varied by inhibitory control, albeit for boys only. In line with our hypothesis, our results showed that for boys with lower-level inhibitory control problems, mothers' harsh parenting increased the odds of being a target of bullying. Unexpectedly, our results also showed that for boys with higher-level inhibitory control problems, mothers' harsh parenting decreased the odds of being a target of bullying. This suggests that higher-level inhibitory control problems "buffer" against the negative influence of mothers' harshness on victimization. Children who have higher levels of inhibitory control problems deal with parental harshness by an outward expression of their frustrations , which may help taking up an assertive stance against peers. Assertive behavior might help boys defend themselves from aggressive peers, as impulsive and hostile behavior exhibited by boys is more accepted by peers than the same behavior shown by girls . Previous studies, albeit in different domains, have also found protective effects of higher inhibitory control problems levels/low levels of inhibitory control. Sette et al. studied relations between shyness and social and school adjustment and found that among children with lower inhibitory control levels, shyness was positively associated with regulated school behavior. The authors argued that higher inhibitory control may contribute to children's behavioral rigidity, making them be perceived as less well behaved, which in turn may be a risk for adjustment difficulties. Similarly, Brooker et al. found a positive relation between social anxiety and socially anxious behavior in children who had higher inhibitory control. These findings suggest that excessive behavioral inhibition can be detrimental in certain contexts , while the opposite pattern may be found when children have more inhibitory control problems. Our findings support both notions: mothers' harsh parenting increased victimization for boys with lowerlevel inhibitory control problems, which might be due to excessive HOGYE ET AL. | 147 behavioral overcontrol and mothers' harsh parenting decreased victimization for boys with higher-level inhibitory control problems. That said, we urge caution in the interpretation of these findings, as more studies are needed to replicate the results and investigate the mechanisms underlying the relations between harsh parenting and victimization. --- | Perpetrator-target behavior Although fathers' harsh parenting was not related to the odds of being a perpetrator-target, the relations between mothers' harsh parenting and the odds of being a perpetrator-target depended on children's inhibitory control and sex. We found variation in inhibitory control in the linkages between mothers' harsh parenting and perpetrator-target behavior for girls, but not for boys. Specifically, for girls with higher level inhibitory control problems, mothers' harsh parenting was related to increased likelihood of being a perpetratortarget. This finding suggests that girls who have higher level inhibitory control problems might deal with maternal harsh parenting by an outward expression of frustration, and internalize experiences from mothers' harshness as cognitive schemas that might prompt them to "imitate" learnt hostile behavior. Impulsive and hostile behavior might be perceived by teachers and peers as less appropriate behavior for girls than boys , and might therefore evoke counter-responses by peers, which may maintain a perpetrator-target status. --- | Strengths, limitations, and recommendations for future studies The novelty of the present study lies in the core of our moderation models. We addressed a new perspective in the literature on bullying involvement by exploring whether the contribution of harsh parenting to different bullying involvement roles is conditioned by children's inhibitory control problems. Drawing on data derived from a population-based multi-informant study, we were able to eliminate single-source bias. When interpreting the findings, however, one should keep in mind our study's shortcomings. First, theoretical work on the dual perpetrator-target role suggests that the group of children who take up a perpetrator-target role is heterogeneous . The operationalization we used in the current paper did not allow for this heterogeneity to come forward. Second, we reported low, but significant, odd ratios, which indicate weak associations between harsh parenting, inhibitory control, and bullying involvement. As our outcome is focused on child behavior at the school setting, while our predictors are more likely reflections on parent and child behavior at home, there might be individual differences in behavior due to the differing demands and environmental structures across these two settings . Third, it is likely that parents underreported on harsh parenting. Thus, our findings may actually be underestimations of the associations between harsh parenting and bullying involvement. Fourth, our sample consisted of intact families with heterosexual parents only, which limits the generalizability of our findings to other family constellations. We recommend future studies to examine the relations between harsh parenting, inhibitory control, and bullying involvement in all types of contemporary families. Fifth, families are argued to be the main socializing agents in childhood . In this study, we focused on parents, as we did not have data on harsh parenting by other family members . Hence, our findings may be less generalizable to families in which members other than the parents pose as children's main socialization role models. Sixth, although our study is longitudinal, we cannot infer causal relations. As data on inhibitory control were not available before the measure of harsh parenting, the possibility of reverse causality could not be excluded. Studies with repeated measures of harsh parenting and inhibitory control are needed to disentangle the temporality between these variables and obtain a better understanding of the interacting antecedents of targets' and perpetrator-targets' behavior. Finally, characteristics other than inhibitory control could moderate the relationships between harsh parenting and bullying involvement. A plausible moderator for future studies to explore is child temperament, as it taps into additional aspects of child reactivity and self-regulation, and its measure includes, but is not limited to, inhibitory control . --- | Implications for interventions Our findings suggest that integrating parental components in antibullying interventions are crucial for reducing bullying involvement. While not all anti-bullying interventions include a parental component, information for parents and parent-teacher meetings are key components contributing to the reduction in bullying involvement . Embedding components on the effects of harsh parenting in interventions for parents-to-be or parents of toddlers might help reduce child maltreatment and milder forms of harshness. Providing mothers and fathers with such components might advance the program effects of VoorZorg , an evidence-based prevention program in the Netherlands that primarily targets child maltreatment in high-risk families . Considering that the Nurse-Family Partnership aims to increase father involvement , making mothers and fathers aware of the detrimental impact of harsh parenting might contribute to the reduction of later social difficulties. Universal anti-bullying interventions are not effective for all children . Our findings reflect upon reciprocal processes between the child, family, and environment, and underscore taking a family system's perspective . Antibullying interventions may therefore benefit from targeting the family as a system, within which individual subsystems and the dyadic interactions between the parents and the child are interlinked . We explored the moderating role of children's inhibitory control problem levels in the relations between maternal and paternal harsh parenting and the likelihood of being a perpetrator, a target of bullying, and a perpetrator-target, and to what extent these associations varied by child sex. Fathers' harsh parenting was unconditionally associated with being a perpetrator, whereas the associations between mothers' harsh parenting and the likelihood of being a target and a perpetrator-target were conditioned upon child inhibitory control and sex. Our results highlight the importance of differentiating by parent and child sex, and by child inhibitory control to understand the intricate relationship between harsh parenting and bullying involvement. We encourage researchers to move beyond studying direct associations and to consider individual differences in how children process harsh parenting. Our findings suggest that even low frequency harsh parenting at preschool age contributes to bullying involvement later on. We recommend early prevention and intervention efforts to incorporate components into their programs on the harmful influence of parental harshness on children's social development. --- DATA AVAILABILITY STATEMENT Data can be obtained upon request. Requests should be directed toward the management team of the Generation R Study , which has a protocol of approving data requests. Because of restrictions based on privacy regulations and informed consent of participants, data cannot be made freely available in a public repository. --- SUPPORTING INFORMATION Additional supporting information may be found in the online version of the article at the publisher's website.
Harsh parenting has been linked to children's bullying involvement in three distinct roles: perpetrators, targets (of bullying), and perpetrator-targets. To understand how the same parenting behavior is associated with three different types of bulling involvement, we examined the moderating roles of children's inhibitory control and sex. In addition, we differentiated between mothers' and fathers' harsh parenting. We analyzed multi-informant questionnaire data from 2131 families participating in the Dutch Generation R birth cohort study. When children were three years old, parents reported on their own harsh parenting practices. When children were four, mothers reported on their children's inhibitory control. At child age six, teachers reported on children's bullying involvement. Our results revealed that fathers', and not mothers', harsh parenting increased the odds of being a perpetrator. No moderation effects with children's inhibitory control and sex were found for the likelihood of being a perpetrator. Moderation effects were present for the likelihood of being a target and a perpetrator-target, albeit only with mothers' harsh parenting. Specifically, for boys with lower-level inhibitory control problems, mothers' harsh parenting increased the odds of being a target. In contrast, for boys with higher-level inhibitory control problems, mothers' harsh parenting decreased the odds of being a target. Furthermore, for girls with higher-level inhibitory control problems, mothers' harsh parenting increased the odds of being a perpetrator-target. Overall, our results underscore the importance of differentiating by children's cognitive skills and by parent and child sex to fully understand how harsh parenting and bullying involvement are related.
Introduction The majority of work-family research has focused on the negative spillover of work stressors and possible consequences for the family domain . Recently, in line with the positive psychology movement , work-family interface research has also included positive spillover , which reflects support, facilitation or enrichment . Greenhaus and Powell suggested that work-family enrichment best captures the mechanism of the positive work-family interface, and they defined work-family enrichment as 'the extent to which experiences in one role improve the quality of life in another role ' . They also developed a theoretical model of the work-family enrichment process, with a focus on two paths to promote work-family enrichment: an instrumental path and an affective path. Thus, workfamily enrichment represents how family roles benefit through developmental resources and positive affect derived from involvement in work. Similarly, family-work enrichment denotes how work roles benefit from family involvement via the same processes . This emerging focus on work-family enrichment supplements the dominant conflict perspective by identifying new ways of cultivating human resources. Carlson et al. described the bi-directional and multidimensional concept of work-family enrichment that work and family provide individuals with somewhat distinct resources that can be used to improve role performance and quality of life in other domains. Accordingly, work-to-family enrichment consists of three dimensions of gains from work to family , while family-to-work enrichment consists of three dimensions of gains from the family to work . The present study adds to the literature by investigating the antecedents of the three dimensions and both directions of work-family enrichment. Kossek, Baltes, and Matthews have recently suggested that there is limited international sampling in work-family studies. Cultural characteristics and the macro-environment in Chinese society may elicit different opportunities for individuals to achieve workfamily enrichment than in Western societies. Compared with their individualistic counterparts, Chinese tend to place more emphasis on work than on leisure, have less concern about work intruding on non-work and see work as contributing to the family rather than competing with it. Such a collectivistic perspective helps alleviate work-family pressure, and thus, Chinese workers seem to experience less work-family conflict than workers from Western societies . Under the influence of Confucianism and Buddhism, harmonious relationships are important for Chinese people. Following arguments presented by Spector and his colleagues on work-family conflict, one would expect that the quality of the relationship with the supervisor would be better, job satisfaction higher and WFE would be more likely to occur among Chinese employees. Similarly, as part of Confucian values, family relations among Chinese are also very important. Thus, perceiving family support will most likely result in family satisfaction, which in turn, may yield higher levels of FWE. China is therefore a very interesting context to examine work-family enrichment processes. In addition, as China is transforming into a market economy-oriented society, social modernization is also creating rapid change in both work and lifestyles, resulting in potentially more interference and interactions between the work and family domains . Whereas several work-family studies have been conducted in China including studies comparing China with Western societies, the results are inconsistent, and the underlying process is still unclear . Additionally, work-family enrichment research has long been criticized for an overreliance on cross-sectional data . In the present study, we investigate the process through which work may enrich the family and vice versa. We will focus on social support as possible resources in both domains that may spill over to the other domain through positive affect and satisfaction with the life domain. Moreover, we will use a longitudinal design in order to test the causal ordering of the model variables. --- Theory and hypotheses Resource conservation, resource gain and work-family enrichment According to the conservation of resources theory , '…people strive to retain, protect, and build resources and what is threatening to them is the potential or actual loss of these valued resources' . Hobfoll suggested that in order to develop and gain more resources, people would employ resources that they possess or call on resources that are available to them from their environment. There is some empirical evidence showing that resources generated in the family role can improve work role performance through an instrumental path . As a key resource in the COR model, social support has two major functions. It serves to protect existing available resources and to enable individuals to obtain new resources. Adams, King, and King differentiated work-related support from non-work-related social support . Many studies on the work-family interface have shown domain-specific effects of social support. For instance, social support from supervisors or colleagues is more strongly related to work-to-family conflict, whereas social support from the spouse is more strongly related to family-to-work conflict . Moreover, Wayne et al. introduced the resource-gain-development perspective to study work-family facilitation, which is consistent with the domain-specific model of work-family enrichment. They suggested that the key enablers of growth and development-and consequently also of work-family enrichment-are personal and environmental resources in the originating domain. In our study, we focused on social support resources as one type of environmental resource and examined the impacts of different types of social support on work-family enrichment through domain-specific outcomes . Supervisory support, job satisfaction and work-to-family enrichment Previous studies have shown that supervisory support is positively associated with job attitudes such as job satisfaction . These findings can be explained by social exchange theory , which states that individuals reciprocate in the form of more favourable attitudes toward the domain that is perceived as the originator of a resource. Reciprocity or bao is one of the social beliefs in Chinese culture . Applying this to work-family enrichment, employees and their supervisors have an exchange relationship with each other. For instance, when employees perceive their supervisors as being more supportive, they feel obligated to reciprocate with positive feeling toward the job and the organization, and they put in increased effort . Consistent with the affective path advocated by Greenhaus and Powell , support from supervisors could help to promote the focal employee's job performance. This would result in satisfaction with one's job role, which in turn may spill over to the family domain and improve family role performance. Rothbard also indicated that greater attentiveness in one domain is indirectly associated with enhanced engagement in another domain through positive affect. For instance, in a recent quantitative diary study among Spanish working couples, Rodríguez-Muñoz, Sanz-Vergel, Demerouti, and Bakker found that employees' daily work engagement spilled over to the home domain, increasing their own happiness level at the end of the day, and indirectly influencing the partner's happiness. Additionally, it has been found that enrichment can occur when the emotions and moods experienced in one role enrich another role, verifying the affective path . Furthermore, as outlined by Wayne et al. , employees experiencing positive affect at work transfer their good mood to their family. In the current study, we focused on job satisfaction as an affect mediating path because not only it represents an affective reaction to job but also it captures an individual's satisfaction with job role in Greenhaus and Powell's work-family enrichment model. Thus, on the basis of social exchange theory, domain-specific effects of social support, and the RGD perspective , we hypothesize that individuals will experience WFE directly when they receive supervisor support at work and that supervisory support will also contribute positively and indirectly to WFE via job satisfaction. Hence, the following mediation hypothesis is posited: Hypothesis 1: Job satisfaction partially mediates the positive relationship between supervisory support and WFE . --- Family support, family satisfaction and family-to-work enrichment Family support may play an extrinsic motivational role by providing instrumental advice to help employees in achieving their work goals . Additionally, family support would also make people experience more positive affect such as positive mood, satisfaction with family roles and psychological well-being by providing emotional support. According to the COR theory , in order to develop and gain more resources, people utilize resources that they possess or call on resources that are available to them from their environment. In collectivistic societies, family support seems to be especially important in motivating employees to work harder at their jobs . Drawing on the tenets of the RGD perspective , employees experiencing positive affect in family life may transfer their good mood to work settings. Stevens, Minnotte, Mannon, and Kiger found that satisfaction with their partner's emotion work was positively related to FWE for both men and women. Empirical studies also provided evidence that family support is stronger positively related to FWE than WFE . In collectivistic cultures, family life and work life are likely to be perceived as being connected rather than distinct . A recent study by Lu et al. found that support from elderly domestic helpers and spouses had significant positive effects on the facilitation component of work-family balance. More recently, Lu et al. reported that family mastery enhanced work engagement-a work-related positive affect in a sample of Chinese nurses. We extend their studies to investigating the mediating role of family satisfaction that acts as an affective path in Greenhaus and Powell's work-family enrichment model. We posit that individuals will experience FWE directly when they receive family support, which will also contribute positively and indirectly to FWE via family satisfaction. Hypothesis 2: Family satisfaction partially mediates the relationship between family support and FWE . --- Method We utilized a three-wave self-administered questionnaire survey for testing the hypotheses. We assessed predictor variables at time 1, mediating variables at time 2 and criterion variables at time 3. A 6-month time lag was specified between the first and the second waves, and another 6-month time lag between the second and the third waves . In the past, the time lag adopted by longitudinal studies in the work-family interface ranged from 6 weeks to 6 years, with most studies reporting a time lag of 1 year . In this study, we conducted a three-wave study with a 6-month time lag between consecutive waves. The span of 6 months was chosen to provide ample separation between our measures while not spacing surveys so far apart as to increase participant attrition. --- Participants and procedures The respondents were drawn from an eye glasses factory in Dongguan, China. On behalf of the research team, the factory's human resource department sent invitation letters to all employees requesting them to participate in the survey three times. Employees were assured of the confidentiality of their response and were informed in the invitation letter that their participation was voluntary. Employees were told that the objective of the survey was to evaluate the effectiveness of work-life policies in terms of business outcomes and measuring individual health outcomes. Sealed completed questionnaires were returned to a designated person in the human resources department. During the first wave in December 2007, two research assistants distributed the questionnaires to employees within the factory. The response rate was 90% out of 3500 workers in the first wave of data collection, and the second wave survey was administered to the 3137 respondents 6 months later after the first wave. After matching the two survey data using a matching code ,we achieved a time 1 and time 2 matched sample of 713 employees . Six months after the second wave, research assistants administered the third survey to the 713 participants, and by the same matching procedure, we achieved a three-wave matched sample of 276 of full-time workers. The low matched rate may be because some participants forgot their codes created at T1 or they did not create their codes at T1 or T2. Furthermore, there are not many varieties of surnames in Chinese; hence, there were many coincidences of codes in the sample that made it difficult for us to identify the matched ones. There were no significant differences between the T3 sample of 276 workers and the original T1 3137 respondents in terms of gender, organizational tenure and marital status. We also compared the time 1 sample of 276 workers and the original 3137 respondents in terms of supervisor support and family support measured at T1 and between the 276 workers and the 713 respondents in terms of job satisfaction and family satisfaction measured at T2. No significant difference was found in any of these tests. At time 1, the respondents ranged in age from 18 to 39 years [M = 23.3, standard deviation = 4.0], and their average organizational tenure was 3.5 years . Over half of the respondents were single or never married, 73 were married or cohabitating, most of them were women and 172 were living with family member. --- Measures The survey instruments were administered in Chinese. The translation and back translation procedure was performed on measures that do not have Chinese versions . Supervisory support and family support were measured at time 1 with eight items developed by O'Driscoll et al. . Respondents were asked how often they had received four different types of support from their supervisor and their family: 'helpful information or advice', 'sympathetic understanding and concern', 'clear and helpful feedback' and 'practical assistance'. A 6-point response scale was used, where 1 = 'never' and 6 = 'all the time'. Internal consistency for the measures of supervisor support and family support were 0.85 and 0.86, respectively. Job satisfaction was measured at T2 by three items from Cammann, Fichman, Jenkins, and Klesh using a 5-point scale with responses ranging from 1 to 5 . A sample item is 'All in all I am satisfied with my job'. Alpha was 0.73. Family satisfaction was also measured at T2 by three items from Edwards and Rothbard using a 7-point scale with responses ranging from 1 to 7 . A sample item is 'In general, I am satisfied with my family/home life'. Alpha was 0.91. Work-to-family enrichment was measured at T3 using the nine-item scale by Carlson et al. containing three dimensions-development, affect and capital. Ratings were completed on a 5-point scale ranging from 1 = strongly disagree to 5 = strongly agree. A sample item for development is 'My work helps me to understand different viewpoints and this helps me be a better family member', a sample item for affect is 'My work puts me in a good mood and this helps me be a better family member' and a sample item for capital is 'My work provides me with a sense of accomplishment and this helps me be a better family member'. The alphas were 0.71, 0.90 and 0.83 for development, affect and capital, respectively. Family-to-work enrichment was measured at T3 using the nine-item scale by Carlson et al. containing three dimensions-development, affect and efficiency. Ratings were completed on a 5-point scale ranging from 1 = strongly disagree to 5 = strongly agree. A sample item for development is 'My family helps me to gain knowledge and this helps me be a better worker', a sample item for affect is 'My family makes me feel happy and this helps me be a better worker' and a sample item for efficiency is 'My family requires me to avoid wasting time at work and this helps me be a better worker'. The alphas were 0.75, 0.92 and 0.83 for development, affect and capital, respectively. --- Data analysis Considering the potential problem of common method variance, the Harman's single-factor test was conducted to examine whether a general factor emerged and accounted for most of the covariance among the measures. In this statistical procedure, all the items were entered into an exploratory factor analysis with un-rotated principal axis factoring. If a substantial amount of common method variance is present, a single factor will emerge from the factor analysis, or one general factor will account for the majority of the covariance among variables. The Amos 19.0 programme was used to conduct confirmative factor analysis before testing our hypothesized relationships. The analysis was performed on variance-covariance matrices. We specified all 10 latent variables into a single confirmative factor analysis. The fit of the measurement model to the data was assessed with the chi-squared statistic, the goodness of fit index , the Root Mean Square Error of Approximation , the comparative fit index , the incremental fit index , the Akaike information criterion and the Tucker-Lewis index . For GFI, CFI, IFI and TLI, values closed to 0.95 or greater are desirable, whereas RMSEA should preferably be less than 0.05; for AIC, ranging from À∞ to +∞ and generally used to compare competing models, the model with the lowest AIC is preferred . Correlations were computed as an initial test of the hypotheses. We used structural equation modelling with bootstrapping to test whether the significant pathways running between support at T1 and enrichment at T3 through satisfaction at T2. Specifically, we tested the bi-directional process model of work-family enrichment separately and the antecedents of sub-dimensions of WFE and FWE rather than overall score of subdimensions. Bootstrapping is a statistical re-sampling method that estimates the parameters of a model and their standard errors strictly from the sample . We extracted new samples from our sample 2000 times and calculated the estimates of the mediation effects . --- Results Harman's single-factor test, confirmative factor analysis and descriptive statistics The results of Harman's single-factor test showed that 10 factors emerged with an eigenvalue greater than 1. The 10 un-rotated factors together accounted for 75.01% of variance, suggesting that common method variance was not of great concern and was unlikely to significantly confound the interpretation of results. We then conducted confirmatory factor analysis to test the validity of our measurement model. The hypothesized 10-factor model showed an acceptable fit to the data [χ 2 = 609.16, degrees of freedom = 419, χ 2 / df = 1.35, GFI = 0.88, CFI = 0.98, IFI = 0.98, TLI = 0.97, RMSEA = 0.038], with factor loadings ranging from 0.61 to 0.92, thus supporting the validity of the constructs measured. Table I shows the means, SDs, correlations and alpha coefficients for the main variables. --- Testing hypothesis 1 Alternative structural models were tested against each other to test the research hypotheses. Specifically, the hypothesized WFE model was compared with a competing full mediation model in which all path coefficients from supervisor support to development, affect and capital were constrained to zero and to a competing direct effects model in which all path coefficients to and from job satisfaction were constrained to zero. As shown in Table II, model A1 produced a significantly better fit to the data than model B1 and model C1 . Therefore, we conclude that model A1, a partial mediation WFE model, provided the most parsimonious fit to the data . The bootstrap analyses confirmed the indirect effects of supervisory support at T1 on affect [bootstrap estimate = 0.06, standard error = 0.03, lower confidence interval = 0.01, higher CI = 0.11, p < 0.05] and on capital through job satisfaction at T2 but not on development . As shown in Figure 1, supervisory support had significant direct effects on capital and development . Additionally, the bootstrap analyses showed that the total effects of supervisory support on affect , capital and development were all significant. These results indicated that job satisfaction partially mediated the relationship between supervisory support and capital and fully mediated the relationship between supervisory support and affect. In other words, employees who perceived more supervisory support experienced more job satisfaction; they then as a member of the family perceived higher levels of security, confidence and accomplishment and more positive emotional states . Thus, hypothesis 1 was partially supported. --- Testing hypothesis 2 The hypothesized FWE model was also compared with a competing full mediation model in which all path coefficients from family support to development, affect and efficiency were constrained to zero and to a competing direct effects model in which all path coefficients to and from family satisfaction were constrained to zero. As shown in Table II, model A2 produced a significantly better fit to the data than model C2 . However, model B2 was significantly better than model A2 . Therefore, we accepted model B2, which is a full mediation FWE model . The bootstrap analyses confirmed that the indirect effects of family support at T1 on affect and on efficiency through family satisfaction at T2 but not on development . Additionally, the bootstrap analyses showed that the total effects of family support on affect and efficiency were significant but not development . These results indicated that family satisfaction fully mediated the relationships between family support and affect and efficiency. It appears that family support enhanced individuals' positive and satisfying feeling towards family, which in turn helped them to be a better worker by improvement of positive emotional states and having a sense of focus or urgency . Hence, hypothesis 2 was partially supported. --- Discussion The purpose of the present study was to test a model of work-family enrichment using a three-wave survey in China. The first process tested social resources as antecedents, WFE and FWE as outcomes, and the second process tested social resources as antecedents, WFE and FWE as outcomes, with affect as mediating variables. We found that time 2 job satisfaction partially mediated the relationship between time 1 supervisory support and time 3 WFE capital, whereas job satisfaction fully mediated the effect of supervisory support on work-to-family affect. In addition, time 2 family satisfaction fully mediated the relationship between time 1 family support and time 3 FWE affect and efficiency. However, the mediation effect of job satisfaction in the relationship between supervisor support and WFEdevelopment was not significant. The findings suggest that when employees receive more support from their supervisor, they are more satisfied with their job. This job satisfaction seems to spill over to the home domain: higher job satisfaction translates into positive experiences in the family domain, including feelings of security, confidence and accomplishment and positive affect. Similarly, when employees receive more support from their family at home, they feel more satisfied and come to work in a positive mood and with a sense of urgency. This study is one of very few that has examined affect as a mediator in work-family enrichment research-in particular in a Chinese context. Our findings therefore provide preliminary empirical evidence offering a more complete understanding of positive work-family linkages in the Carlson et al. work-family enrichment model. In the present research, we treated satisfaction with job and family as affective responses, which can positively improve the quality of life in the other domain. As argued earlier, our findings can be explained by social exchange theory . Perhaps because our samples are Chinese, and the contribution and need for a family was much more important in their lives ; thus, the findings of family satisfaction being a mediator between family support and family-to-work enrichment are more consistent than those found in WFE. Scholars have noted that more research on the antecedents of family-to-work enrichment is needed as there is a paucity of such studies in the work-family literature . Our study has added to Lu et al. finding that family support is an indirect antecedent of familyto-work enrichment via family satisfaction, thus filling this gap of knowledge and contributed to Western theories in work-family literature. --- Contributions of the present study The current study offers a significant contribution to the extension, validation and generalization of Western theories. The present study also further supports the COR theory and the RGD perspective -testing a bi-directional process model of work-family enrichment linking differential social resources and affect. To date, few studies have examined the differential impact of specific social resources on WFE and FWE respectively, to confirm the domain-specific effects of social support. Thus, our study contributes to this literature by adopting a three-wave survey design, on the basis of the COR theory and the RGD perspective. To date, this is the first longitudinal study adopting a three-wave design in a Chinese context, which is especially valuable for testing assumptions about causality of the three dimensions of the bi-directional work-family enrichment processes and extends previous findings on work-family enrichment research in Chinese societies. Therefore, our study directly contributes to the growing work-family enrichment literature. Whilst work-family enrichment is becoming a topic of popular national concern, mainland China is under-represented in this pool of academic knowledge. As mentioned earlier, research has found that, in a collectivistic culture, people tend to have closer ties to extended family members who provide both material and social support for family responsibilities . It is therefore valuable to test Western theories of work-family enrichment within the Chinese context . --- Research limitations Several limitations of this study should be noted. Firstly, we were not able to collect performance data in the work and family domains, in order to directly assess role performance. Secondly, the study was based on self-reports, which may raise questions of commonmethod bias . However, the predictors, mediators and outcomes were separated in time from each other, which could lower the likelihood of finding correlations which are simply because of response consistency. In addition, the results from the Harman's single-factor test also showed common-method variance was not a major problem in the present study. Thirdly, unexpectedly, we found that supervisory support did not have a direct effect on work-to-family affect enrichment, while family support did not have a direct positive effect on the three dimensions of family-to-work enrichment. However, we cannot exclusively attribute these differences to the impact of collectivistic culture, since we did not directly assess cultural variables in our study. Future research needs to examine the cross-cultural generalizability of our findings. --- Practical implication of the findings The findings of our study highlight the importance of social support in helping employees to integrate their work and family life. The positive impact of supervisor and family support on work-family enrichment has implications for both managers and family members, because social support provided in one domain not only improves employees' evaluation of role experiences in that domain but also has beneficial influence on the other domain . Recognition of the interdependence between work and family domains provides an impetus for both managerial and family members to support skilled workers. Another important finding in the current study concerns the mediating effect of job and family satisfaction, which suggests that positive evaluations of role experiences in one domain are important for affect in the other domain. This finding has direct implications for both employees and organizations. Employees need to be aware that quality role experiences, rather than reduced participation in one domain, can enable cross-domain enrichment. They could direct their efforts to enhancing the quality of role experiences in each domain, for example, by working more efficiently or providing better service at work or by spending quality time with family. At the organizational level, our findings reveal the importance of valuing employees' family lives, because quality family life will in turn enhance employees' role performance at work. In addition, the findings provide empirical evidence that investment into cultivating employees' job satisfaction or positive affect is important, because it may have a positive impact beyond the workplace . In sum, the impact of supervisor and family support on work-family enrichment warrants further attention. --- Conclusion The proposed bi-directional processes of work-family enrichment were found in this three-wave study using Chinese sample. Supervisory support can indirectly promote individuals' affect and capital as family members through enhancing the feeling of job satisfaction, while family support can also indirectly promote individuals' affect and efficiency as work members through enhancing the feeling of family satisfaction. In addition, supervisory support also had a directly positive effect on individuals' development and capital as family members. ---
On the basis of conservation of resources theory (Hobfoll, 1989) and the resource-gain-development perspective (Wayne, Grzywacz, Carlson, & Kacmar, 2007), this paper examines the differential impact of specific social resources (supervisory support and family support) on specific types of affect (job satisfaction and family satisfaction, respectively), which, in turn, influence work-to-family enrichment and family-to-work enrichment, respectively. A sample of 276 Chinese workers completed questionnaires in a three-wave survey. The model was tested with structural equation modelling. Job satisfaction at time 2 partially mediated the relationship between time 1 supervisory support and time 3 work-to-family enrichment (capital), and the effect of supervisory support on work-to-family enrichment (affect) was fully mediated by job satisfaction. Family satisfaction at time 2 fully mediated the relationship between time 1 family support and time 3 family-to-work enrichment (affect, efficiency). Implications for theory, practice and future research are discussed.
Introduction The fast advancement of technology has completely revolutionized the way people live, communicate, and carry out their daily activities. This, in addition to the multitude of benefits it offers, also brings with it disadvantages and serious problems that humanity faces today. One of the most widely debated and popular issues encountered nowadays, due to the advancement of technology, is the spread of false information. Before going further with the discussion, we need to state that there is a difference between the terms regarding "misinformation", "disinformation", "malinformation", "propaganda", and "fake news". As Gradon et al. [1] mention, citing Wardle and Dias [2], misinformation refers to false information that is not distributed with the intent to cause harm. Thus, in this case, the individuals might choose to distribute the information via different channels from the desire to be helpful in a given situation. The quick progress in technology has made it possible for anyone to access the Internet and social media platforms [3,4]. Fake, misleading, or manipulative information spreads incredibly easily and has an extreme impact on our society, making it harder to discern between truth and fiction. Conspiracy theories, photos, video manipulation, and fake news are just a few examples of the various types of misinformation that can be distributed effortlessly through the use of social media and communication technology. Among the main causes of the spread of misinformation is that it often matches individual beliefs and feelings, amplifying its impact and influence, as people tend to look for information that supports what they already believe. On the other hand, there are situations in which the users of social media are spreading misinformation as an act of being present on social media, without even thinking about fact-checking [5]. As Del Vicario et al. [6] observed, selective exposure to content represents the main primary driver of content diffusion, while the homogeneity and polarization in each group of people determine the dynamics and the size of the misinformation outcome. On the contrary, "disinformation" is also a popular word associated with this field, but its correct definition is false information that is created/disseminated with a clear purpose to cause harm. As Gradon et al. [1] mention, when disinformation occurs, it is specifically produced by individuals/organizations that have a political, psychological, social, and/or financial motivations. The term "malinformation" refers to a situation in which the information is true, but the intent is to produce harm-it usually refers to cases in which private information is revealed with the purpose of harming/destroying the reputation of a person/company. On the other hand, "propaganda" can be either true or false information and has the purpose to persuade an audience [1], often bearing a political connotation. Regarding the term "fake news", there is an entire controversy about how it is meant to be used. Carmi et al. [7] pointed out that the initial intention regarding the use of the term was to signify both the use of misinformation and disinformation. With all these, some political actors have begun to use it as an accuse to discredit the news sources that were not in line with their political views, which were conducted in a confusion related to the true meaning of the term [1]. In this context, a report by the UK Government has highlighted the decision to no longer use the term "fake news" [1,8]. Dennis et al. [9] underline the fact that such news has the capacity to spread faster, farther, and more broadly than the true news, producing major societal impacts. In this context, Siino et al. [10] underline the fact that in order to prevent the fake news from spreading, a near-real-time reaction is crucial. The spread of fake news may lead to serious problems, including the harming of democratic processes, intensifying instability in society and politics, and diminishing public confidence in public institutions [11], thereby making combating this phenomenon of utter importance [12]. Similar definitions related to the use of the abovementioned terms are provided in a post on the Taylor & Francis website [13], while Lazer et al. [14] provide an insightful discussion related to "the science of fake news". As a result, in this paper, we are only discussing the issues related to misinformation detection, and we use the misinformation definition as presented above. It should be noted that combating the misinformation phenomenon is a complex and challenging task. When addressing it, one should consider the limits between freedom of expression and the need for a society protected from misinformation. Thus, the subject is under a continuous debating process [15,16]. A recent event in the healthcare domain that has triggered an abundance of uncertainty and fear in people across the globe is the COVID-19 pandemic [17]. Some of the news and information surrounding this significant event included conspiracy theories that caused fear and suspicion of medical authorities, as well as false information regarding the virus's origins, vaccines, and unconfirmed efficacy of treatments [18]. Additionally, false information that exaggerated or minimized the pandemic's severity was spread around the globe, leading to a negative impact on public awareness of risks and safety measures [19]. This event attracted the attention of scientific researchers from all around the world who, based on the conducted studies, tried to better determine the causes, trends, and possible strategies to combat the disinformation phenomenon. For example, Barua et al. [20] discuss the effects of misinformation on COVID-19 individual responses, suggesting to the authorities to initiate proper safety measures in order to protect public health from being exploited. Krittanawong et al. [21] focus their misinformation dissemination study on the data taken from Twitter, as the authors have observed that Twitter has also played an important role in the propagation of misinformation in the case of other endemics that the world has faced . As a result, the authors extracted a dataset from Twitter based on specific keywords and observed that the selected tweets contain unverifiable information and blatant misinformation [21]. As the authors underline, the misinformation in the selected tweets has mainly been of three causes: the assumption that there is a relationship between influenza infection and COVID-19, the assumption that the influenza vaccina can lead to a positive COVID-19 test, and the assumption that some of the death cases related to influenza-and allergy-related situations have been reported as death cases due to COVID-19 [21]. Furthermore, politics is another field where misinformation is a serious concern. Disinformation may spread rapidly through the use of information shared on social media platforms to manipulate voters and democratic processes in unanticipated ways. It comes from the desire to control society, achieve profit, as well as gain specific goals, like different benefits and positions. Several researchers have been interested in this topic since the dissemination of misleading information in politics can have detrimental effects, including decreasing public confidence in institutions and causing disorder and tensions in society [22][23][24]. Other than that, the economic domain is also impacted by misleading information. People can make wrong financial choices or conduct risky transactions as a result of inaccurate or manipulated information about financial markets, economic trends, or business opportunities. These actions can directly affect people's well-being and the general condition of the economy as a whole, respectively, causing instability in financial markets. Thus, combating misinformation in the economics domain requires a responsible and cautious approach to verifying sources and trusting financial and objective information [25]. Since misinformation represents an actual danger in today's globalized society, education and the practice of professional journalism have become essential weapons in the ongoing battle against it. It is crucial to comprehend this phenomenon, determine its origins, and implement efficient countermeasures against misinformation in order to protect truth, democracy, and information integrity in our current age. Critical thinking skills, examining the sources of the information one consumes, and recognizing the dangers of false information and the serious consequences it may have on both personal and societal levels have become of utter importance in present-day society, highly affected by various uncertainties. Misinformation affects trust in public institutions, political, economic, and financial decisions, as well as social relations, public health, safety, and education of the population. Spreading misinformation on social networks and beyond is a very severe concern in today's society. Focusing on the misinformation and the artificial intelligence tools to deal with it, Vicari and Komendatova [26] highlighted that misinfor-mation can strongly influence risk management. According to the authors, policies and programs to encourage the topic of artificial intelligence tools for reducing misinformation on social media are of utter importance [26]. Having said this, the present study focusses on performing a bibliometric analysis in the context of a misinformation detection area, starting from the selection of a relevant set of articles in this field and their in-depth evaluation. The use of the bibliometric approach relies on the fact that this type of analysis offers the required information for analyzing the main contributors to the field in terms of either authors, sources, universities, and countries, while highlighting information related to the used keywords, trends, and connections among the authors [27]. Thus, the aim of the paper is to identify hidden trends and to offer new perspectives and possible strategies to combat this dangerous phenomenon. In order to achieve this aim, the paper tries to answer a series of research questions, as highlighted in the following: In order to answer the formulated research questions, a dataset has been extracted using the Web of Science platform [28] and has been analyzed as described in Section 2 of the paper. Thus, the subsequent sections of the paper deal with the methodology used for dataset extraction and bibliometric analysis , analysis of the dataset through bibliometricspecific indicators, including a review of the top 10 most cited papers , discussions and limitations , and concluding remarks . --- Materials and Methods As Block and Fisch [27] stated, there should be noted the difference between the bibliometric analysis and a review analysis. While the latter deals with providing a summary of the content and of the most important findings within a field, the bibliometric analysis is mainly used for highlighting the structure of a particular field, focusing on its development [27]. From a methodological point of view, the bibliometric analysis comprises mainly two parts: one related to the dataset extraction, and another one dedicated to performing the bibliometric analysis [29,30]. The two parts are described in the following sub-sections. --- Part 1: Dataset Extraction In the dataset extraction part, a series of filters are applied to the WoS platform in order to extract the papers associated to the misinformation detection area . The choice for the WoS platform is in line with the observations made by Bakir et al. [31], who underline that the platform covers a wide range of disciplines and journals, being at the same time highly recognized by the research community. Similar ideas are highlighted by Cobo et al. [32], Modak et al. [33], and Mulet-Forteza et al. [34]. Furthermore, in order to support the choice of this platform, we must mention that two of the most wellknown software programs for conducting the bibliometric analysis, namely VOSviewer [35] and Biblioshiny [36], provide the option to process the files extracted from a limited amount of databases, including WoS. Another point that should be highlighted in the paper is related to the access to the papers offered by the WoS platform. As Liu [37] and Liu [38] observed, the WoS platforms offer access to the user based on subscription. Thus, different types of subscriptions might lead to differences in the dataset extraction. In this context, we have to mention that we have had access to all ten indexes offered by the WoS platform. The first exploration step included in the dataset extraction part consists of a search action performed on title, abstract, and keywords. Fifty-six articles were obtained from a query that searched in all available titles and returned only the ones that contain keywords related to misinformation detection, namely "misinformation_detection" and "de-tect_misinformation". The choice for the search keywords is in line with similar studies on the same topic. For example, Vicari and Komendatova [26], in a study dealing with artificial intelligence tools to deal with misinformation, use "misinformation" as a research keyword for extracting the database from the WoS platform. Yeung et al. [39], in a paper discussing medical-and health-related misinformation, used the term "misinformati" along with other specific keywords related to online media and the medical field. In addition, "misinformation" has been used by Mahajan and Gupta [40] in the context of COVID-19 vaccine misinformation on social media. The second and third queries used were similar to the previous one, with the same filtering criteria, respectively the same keywords, but this time applied to the abstract and keywords. The results showed that the second query returned 151 documents, while the third one returned 58 articles. The last query that was executed in the first exploration step applied the OR operation between all the previously used queries. Hence, after merging, 185 documents resulted that contain words related to misinformation detection, either in the title, abstract, or keyword sections . The second and the third exploration steps restricted the dataset collected exclusively to articles written in English. This was decided based on the fact that the majority of the researchers and the intended readership for the papers understand the English language. Furthermore, it should be stated that through the idea of "article", the WoS platform indexes all the papers that represent relevant research [41]. Therefore, in the type of document marked as "article", the WoS platform also includes conference proceedings [41]. As Donner [42] stated, choosing a particular type of document for the bibliometric analysis is mandatory for differentiating and properly comparing the selected documents. Thus, as can be observed from Table 1, the number of articles returned, namely 185, was not affected after applying the language criteria, as the keywords relevant to misinformation detection utilized in the first step were in English; therefore, the articles returned in the first phase were all written in English. On the other hand, the dataset acquired was limited after applying the "article" condition, which led to a significant reduction in data collection, specifically 79 articles . The final step, the fourth one, involved imposing a restriction regarding the year of publication. Since the study was conducted in early November 2023, the year 2023 was excluded from the investigation, as it is still ongoing at the moment of analysis and incomplete in comparison to the other years. As a result, the timestamp chosen covers the years 2016-2022, and after making use of this filter, the total number of articles obtained and included in the examination is 56 . --- Part 2: Performing Bibilometric Analysis For conducting the bibliometric study, it was exploited the well-known R tool, respectively the Biblioshiny 4.1 software, developed by Aria and Cuccurullo [43]. Biblioshiny provides insights about the analyzed area, along with highlighting crucial linkages between different aspects, considering its outstanding ability to evaluate data, design graphs, and create illustrations, interactive tables, and images [44]. Considering the scientific literature, it has been chosen for bibliometric analyses from various research areas, such as, but not being limited to: software testing [45], analyzing oil prices and financial assets [46], education [47], Industry 5.0 [48], the use of artificial intelligence in agent-based modeling [49], the use of agent-based modeling in transportation [50], grey systems theory [51], neutrosophic theory [52], and cybernetics [53]. The steps taken for conducting the bibliometric analysis are highlighted in Table 2. While most of the indicators used are self-explained through their name, there are some indicators on which more information should be provided. For example, Bradford's law on source clustering delineates the most-cited journals within the selected dataset. According to Bradford's law, the journals are divided into three categories by taking into account the number of articles published by each of them [54,55]. Basically, it is expected that when considering the proportion of the papers in every cluster to represent 1/3 of all the papers, the number of sources in each cluster is 1:n:n 2 [54,55]. Furthermore, an interesting indicator that needs further explanation is the normalized total citations . This indicator is obtained by dividing the total number of citations acquired by an article by the average number of citations of the papers published in the same year in which the paper has been published [51]. Also, the metric gives equal credit to all the authors; therefore, its values are obtained without further division of the metric by the number of the authors. In the particular case in which in the dataset only one paper is published in a specific year, the value of the NTC is equal to 1. Therefore, the metric indicates how many times the current paper has scored more citations than the average publication from the same year. The metric depends both on the number of the total citations of the paper to be analyzed but also on the scientific production of the same year in which the paper has been published. In addition to the information provided in Table 2 regarding the bibliometric analysis conducted in this study, it should be stated that in the fourth step dedicated to papers analysis, we have provided an overview on the top 10 most cited papers, followed by a review of the top 10 most cited papers for better highlighting the research interests of the papers that have succeeded in attaining the attention of the research community. Furthermore, as the resulted database contains a relatively low number of documents, in the papers analysis step, we have divided the dataset into several categories based on the analysis conducted in the paper, the purpose of the analysis, used methodologies and results, for the purpose of better shaping the research interest in the papers published in the area of misinformation detection. --- Dataset Analysis The data collected in the previous section, associated with mapping the landscape of misinformation detection, are meticulously analyzed from different perspectives in the next pages, by providing precise details in terms of sources, citations, authors, existing literature, and many more aspects. --- Dataset Overview Table 3 provides the main information about the dataset collection, which is comprised of an overall number of 56 papers published in 41 different journals throughout a seven-year period, from 2016 to 2022. The small value obtained for the average years from publication, namely 2.04, suggests that a considerable number of articles included in the analysis are recent papers. Furthermore, from Table 3 it results that articles written in the area of misinformation detection have considerably caught the attention of the scientific community, a hypothesis proved by the increased value obtained for the average citations per documents of 15.27, along with 4.621, the average citations per year per document. The number of references is also significative in this field, namely 2821. By analyzing the graph corresponding to annual scientific production evolution, captured in Figure 1, a significant upward trend can be clearly spotted. In the period between 2016 and 2018, a maximum of two documents were published per year, followed by a substantial increase registered later in 2022, reaching up to 23 documents, presenting an annual growth rate of 68.64%. The upward trend depicted in Figure 1 in the latest years of the analysis might be due to the occurrence of the COVID-19 pandemic, which has boosted the misinformation content on all media channels, including social networks. Figure 2 captures the annual average article citations per year evolution, with values that oscillate within 1.5 and 8.3, suggesting that the papers written in the area of mapping the landscape of misinformation detection had a remarkable visibility in the selected timestamp of 2016-2022. The trend is characterized by fluctuations-the greatest value was registered in 2020, while the smallest one, in 2017. Analyzing the peak in Figure 2, we can anticipate that a great number of the papers included in the dataset are related to the misinformation detection in the period of the COVID-19 pandemic. The downward trend depicted for 2021 and 2022 in Figure 2, correlated with the high number of papers published in the 2021-2022 period as presented in Figure 1, might be due to the limited period of time between the year in which the papers have been published and the moment in which the dataset has been extracted and might not be related to a decrease in the interest in the topic of misinformation detection. The information regarding the documents' contents is presented in Table 4. A total of 199 keywords have been documented, with an average of 3.55 keywords associated with each document. The obtained value is in line with other research from the field which has featured the use of a bibliometric analysis, being positioned at the superior limit of the expected data [52]. As the extracted papers on misinformation detection have been published mostly in the recent year, it has been observed that the issues related to keywords retrieval by WoS from the journals' websites or the situations in which the journals did not require for the papers to have keywords specified within their contentas discussed by Liu [56]-have been overcome. The information regarding the documents' contents is presented in Table 4. A total of 199 keywords have been documented, with an average of 3.55 keywords associated with each document. The obtained value is in line with other research from the field which has featured the use of a bibliometric analysis, being positioned at the superior limit of the expected data [52]. As the extracted papers on misinformation detection have been published mostly in the recent year, it has been observed that the issues related to keywords retrieval by WoS from the journals' websites or the situations in which the journals did not require for the papers to have keywords specified within their content-as discussed by Liu [56]-have been overcome. Keywords plus, known as index terms that were automatically generated from the titles of cited articles, have a value of 78, resulting in an average of 1.39 such terms per document. Table 5 reveals insights about the authors, distinguishing a total of 178 researchers with 191 appearances. By analyzing the small value for authors of single-authored documents, specifically 2, and comparing it with 56, the total number of extracted documents, it can be highlighted that this discrepancy suggests a strong possibility of a dense collaboration network among authors in the field of mapping the landscape of misinformation detection. This inference is strengthened by the fact that 176 writers are involved in multi-authored papers, a substantial proportion when compared to the total number of authors, which stands at 178, as illustrated in Table 5. As depicted in Table 6, the number of single-authored documents is 2, the same value as the one for authors of single-authored documents. This can be interpreted as an indication of the fact that the researchers who have opted for the choice of publishing papers as single authors have, on average, contributed to approximately 1 document. Given that the number of authors surpasses the number of selected papers in the bibliometric analysis, the documents per author indicator achieves a value of 0.315, showing an average of 3.18 authors contributing to each publication. The number of co-authors per document is 3.41, and the increased value of the collaboration index, namely 3.26, suggests that the authors opted to collaborate in this area. Other essential journals, addressing topics ranging from big data's societal impact to environmental research, IT, computer science, and social network analysis and mining, all with 2 documents, are listed in alphabetical order: Big Data & Society, International Journal of Environmental Research and Public Health, IT Professional, Peerj Computer Science, Social Network Analysis and Mining. --- Sources Analysis Considering the journals that have been included in the top 8 most relevant sources, it should be noted that most of the sources are in the area of computer sciences, while some of them are in the area of social sciences and public health. Given that most of the papers included in the dataset belong to the COVID-19 period, it was expected that the profile of the journals in which the papers dealing with misinformation detection have been published be of either computer science or social networks-public health. The application of Bradford's law emphasizes the essential significance of the aforementioned sources, thus requiring creating three separate zones in accordance with the concept at hand. The first, zone 1, consists of a few extremely prolific publications that are renowned for their frequent citations in scientific literature. Moving on to zone 2, we find a broader range of sources classified as moderate producers, each with a solid, but average, citation count. Finally, in the last one, zone 3, we find a substantial store of publications, their production showing a noticeable and steady fall, with citations in scientific literature occurring only occasionally. Considering the journals that have been included in the top 8 most relevant sources, it should be noted that most of the sources are in the area of computer sciences, while some of them are in the area of social sciences and public health. Given that most of the papers included in the dataset belong to the COVID-19 period, it was expected that the profile of the journals in which the papers dealing with misinformation detection have been published be of either computer science or social networks-public health. The application of Bradford's law emphasizes the essential significance of the aforementioned sources, thus requiring creating three separate zones in accordance with the concept at hand. The first, zone 1, consists of a few extremely prolific publications that are renowned for their frequent citations in scientific literature. Moving on to zone 2, we find a broader range of sources classified as moderate producers, each with a solid, but average, citation count. Finally, in the last one, zone 3, we find a substantial store of publications, their production showing a noticeable and steady fall, with citations in scientific literature occurring only occasionally. Figure 4 presents the Bradford's law on source clustering. Based on this, there can be distinguished a group of 6 sources allocated to the popular zone 1, underlining their remarkable status as highly cited journals: IEEE Access, Information Processing & Management, International Journal of Advanced Computer Science and Applications, Big Data & Society, International Journal of Environmental Research and Public Health, and IT Professional. Furthermore, the relevance of the journals' significance has been analyzed through the use of the H-index indicator. The H-index, as it is typically referred to, measures the number of papers in a journal that have accumulated at least H citations, demonstrating the scientific significance of these publications. The Information Processing & Management journal is ranked in the first position based on the H-index value, with 5 papers that gained 5 or more citations in the area of misinformation detection. As expected, the sources that belong to zone 1, according to Bradford's law, occupy the foremost positions in the ranking and score high values for Hindex, between 4 and 2. For more details, please see Figure 5. Furthermore, the relevance of the journals' significance has been analyzed through the use of the H-index indicator. The H-index, as it is typically referred to, measures the number of papers in a journal that have accumulated at least H citations, demonstrating the scientific significance of these publications. The Information Processing & Management journal is ranked in the first position based on the H-index value, with 5 papers that gained 5 or more citations in the area of misinformation detection. As expected, the sources that belong to zone 1, according to Bradford's law, occupy the foremost positions in the ranking and score high values for H-index, between 4 and 2. For more details, please see Figure 5. The Information Processing & Management journal is ranked in the first position based on the H-index value, with 5 papers that gained 5 or more citations in the area of misinformation detection. As expected, the sources that belong to zone 1, according to Bradford's law, occupy the foremost positions in the ranking and score high values for Hindex, between 4 and 2. For more details, please see Figure 5. Furthermore, it has been observed that all the papers listed as top journals based on H-index have also been listed as top journals based on the number of Furthermore, it has been observed that all the papers listed as top journals based on H-index have also been listed as top journals based on the number of published documents , highlighting the important contribution of these journals to the body of literature associated with misinformation detection. The journals' growth based on the number of published papers is captured in Figure 6. As anticipated, IEEE Access presents the most substantial growth, followed closely by Information Processing & Management. Information 2024, 15, x FOR PEER REVIEW 13 of 44 published documents , highlighting the important contribution of these journals to the body of literature associated with misinformation detection. The journals' growth based on the number of published papers is captured in Figure 6. As anticipated, IEEE Access presents the most substantial growth, followed closely by Information Processing & Management. The most prolific authors are Barve Y and Saini JR, both with 3 published documents, each constituting 5.36% of the total papers extracted. Other relevant authors with 2 The most prolific authors are Barve Y and Saini JR, both with 3 published documents, each constituting 5.36% of the total papers extracted. Other relevant authors with 2 published papers are listed in alphabetical order: Alsmadi I, Apostol ES, Ashok N, Ekbal A, Ghosal T, Kotecha K, Kumari R, Truica CO, and Zhou F. --- Authors Analysis --- Authors Analysis An obvious pattern can be identified in Figure 8, suggesting that most misinformation detection efforts have met an obvious increase since 2021. The substantial boost in research output can plausibly be linked to the lasting effects of the global catastrophic event, namely the COVID-19 pandemic. This unexpected health disaster has highlighted the need for innovative strategies to stop the widespread transmission of misleading information in times of crisis, along with the vital need for effective detection of misinformation, an area that attracted the interest of numerous researchers. An obvious pattern can be identified in Figure 8, suggesting that most misinformation detection efforts have met an obvious increase since 2021. The substantial boost in research output can plausibly be linked to the lasting effects of the global catastrophic event, namely the COVID-19 pandemic. This unexpected health disaster has highlighted the need for innovative strategies to stop the widespread transmission of misleading information in times of crisis, along with the vital need for effective detection of misinformation, an area that attracted the interest of numerous researchers. Figure 10 depicts the top 8 most relevant corresponding author's country. As can be observed, the USA is in the number one spot, with a quantity of 14 documents out of 56, the total amount of extracted papers, representing 25% of the whole dataset collection. Furthermore, the USA encompasses a remarkable position when it comes to the values registered for both the intra-country collaboration index, Single-Country Publications and the inter-country collaboration index, Multiple-Country Publications . Other relevant countries that must be mentioned here are India , China , Spain , the United Kingdom , Australia , Germany , and Romania . For more information, please see Figure 10. One can effortlessly comprehend the distinctive contributions that come from various countries throughout the world by using a global map perspective. Figure 11 displays scientific contributions in a simple manner, with colors that range from shades of gray, that indicate the lack of published documents in the subject of misinformation detection, such as for Turkey, Greece, and Canada, to dark blue, which reflects significant contributions in this area, as in the case of the USA. Figure 12 captures the top 20 most cited countries. As expected, the USA holds the leadership position with an impressive number of 382 total citations and an average of citations per paper of 27.30. --- Publications . Other relevant countries that must be mentioned here are India , China , Spain , the United Kingdom , Australia , Germany , and Romania . For more information, please see Figure 10. One can effortlessly comprehend the distinctive contributions that come from various countries throughout the world by using a global map perspective. Figure 11 displays scientific contributions in a simple manner, with colors that range from shades of gray, that indicate the lack of published documents in the subject of misinformation detection, such as for Turkey, Greece, and Canada, to dark blue, which reflects significant contributions in this area, as in the case of the USA. Figure 12 captures the top 20 most cited countries. As expected, the USA holds the leadership position with an impressive number of 382 total citations and an average of citations per paper of 27.30. China is ranked in second place , while in third place is situated Saudi Arabia . For more details, please see Figure 12. China is ranked in second place , while in third place is situated Saudi Arabia . For more details, please see Figure 12. Figure 13 depicts the country collaboration map, and as it can be observed, the USA presents the highest number of collaborations with other countries, more specifically 11. Among the researchers who collaborate with authors from the USA, there are included members from China, the Netherlands, and Poland. China is ranked in second place , while in third place is situated Saudi Arabia . For more details, please see Figure 12. Among the researchers who collaborate with authors from the USA, there are included members from China, the Netherlands, and Poland. Figure 14 shows the collaboration network in a graphical representation, including the top 50 most relevant researchers in the area of misinformation detection. Figure 14 shows the collaboration network in a graphical representation, including the top 50 most relevant researchers in the area of misinformation detection. --- Papers Analysis To shed light on a diversity of aspects such as the main author's name, the year of publication, the journal in which the paper was published, the digital object identifier , the number of authors involved in the research, their country of origin, alongside with the numerical values for key indicators useful in the analysis, such as the total number of citations , total citations per year , and normalized TC , the first 10 most cited globally documents belonging to misinformation detection area are extracted and listed in Table 7. --- Papers Analysis To shed light on a diversity of aspects such as the main author's name, the year of publication, the journal in which the paper was published, the digital object identifier , the number of authors involved in the research, their country of origin, alongside with the numerical values for key indicators useful in the analysis, such as the total With the aim of providing an in-depth understanding of the content and assisting readers in determining their level of interest in this study, a brief summary of each paper is offered, together with a concise extraction of the methods employed, the data analyzed, and the research's purpose. The latter component of this section additionally encompasses a textual analysis, evaluating the most frequently used words found in the entire data collection set. This investigation provides precious details of the dominant themes, patterns, and terminology in the research carried out, by offering a comprehensive resource for grasping the topic being studied. Therefore, the pages that follow provide complete explanations enhanced by interactive graphical representations, such as word clouds. --- Top 10 Most Cited Papers-Overview Based on the information presented in Table 7, the paper that is placed in the first position according to the number of citations is the one written by Shorten et al. [57], which has accumulated 125 total citations, and impressive values for TCY of 41.67, NTC of 6.45, in a period of 2 years since its publishing. Furthermore, the value of the NTC for this paper is 6.45, showing that it has received 6.45 times more citations than the average of the publications in the same year from the dataset. The primary article is closely followed by another noteworthy publication in the domain of misinformation detection, belonging to Khan et al. [58], which has also gathered high values in terms of citations: TC-92, TCY-18.40, NTC-3.25. The idea that the impact, influence, and popularity of these articles stand as indeed substantial is additionally supported by the increased values regarding the indices analyzed in the table below-for each of the extracted articles, the value for total citations exceeds 27, TCY surpasses 9.00, and NTC is greater than 1.39. As anticipated, in light of the preceding data, there is an increased degree of collaboration among researchers. Based on the data presented in Table 7, the number of authors varies between 2 and 5; hence, a quick computation reveals that the first 10 most cited articles have an average number of 3.1 authors. This suggests that scientists in the aforementioned area opt for collaborating, rather than carrying out individual studies. --- Top 10 Most Cited Papers-Review The articles which reached the top 10 most referenced list are reviewed and summarized in brief form in the ensuing section. Highlighting the ways in which deep learning technology could benefit in the fight against the global pandemic was the principal objective of the study conducted in the article that belongs to Shorten et al. [57], which investigated a variety of deep learning technologies associated to the COVID-19 outbreak. In summary, the paper illustrates how deep learning can be extremely helpful in managing the COVID-19 pandemic and how useful it can be when it is applied to biomedical research, medical image analysis for the diagnosis and identification of disease in images, epidemiology, and the detection of disinformation, having the potential to significantly reduce false information and truly aid in situations of panic and crises. The purpose of the study performed by Khan et al. [58] was to detect the variables that affect people's capacity to identify false information and the tendency to share unverified content on social media. Multiple linear regression models were used to analyze the data collected in the study to examine the relationships between various independent variables and the two dependent variables: perceived self-efficacy to recognize misinformation and social media sharing behavior without verification . The research used survey data that were collected from 396 participants in Indonesia, and the results demonstrated that people's perceived self-efficacy in identifying misinformation was significantly impacted by multiple criteria including income, education level, information-checking skills, and attitude toward verifying information. The outcomes emphasize the necessity of educational initiatives to address this emerging issue and the crucial role that information literacy and verification skills play in preventing the spread of misleading information. As the title suggests, the in-depth investigation carried out in the article by Al-Rakhami et al. [59] attempts to better understand the effects of COVID-19 on Twitter and combat misinformation. A consistent collection of tweets, comprising 287,534 non-credible and 121,950 credible tweets, was gathered over a three-month period. The research performed a complete evaluation of the methodologies used in this context, including data collection, annotation, and feature extraction, along with machine learning algorithms, with the ultimate objective of developing an efficient ensemble learning model for misinformation detection. The results of the study demonstrated that, in terms of detection accuracy, the ensemble learning model performed better than the individual machine learning models, with the C4.5 model obtaining the best accuracy of all. The aforementioned findings emphasize the significance of recognizing and responding to misinformation in times of crisis, the need for effective security measures, and also brings to the fore how rapidly false information spreads on social media and how significant it is to support and promote trustworthy sources of information as a means to prevent misleading information during situations of emergency. The primary objective of this study by Zhao et al. [60] was indeed to offer a framework for content analysis and data-modeling-based disinformation detection in the online health sector. With the goal to build models capable of distinguishing false information in online communities, five popular classification models, such as Random Forest, were used as part of the whole process. In order to achieve this, the study used 151,719 records that were gathered from a particular website that addressed autism-related subjects. The results of the present research demonstrated that user behavior characteristics, as compared to linguistic, thematic, or sentimental characteristics, were more significant for detecting misinformation. Such techniques highlighted here may be helpful in identifying and combating misinformation in online health communities. The fifth article, by Ayoub et al. [61], aims to counteract misinformation about COVID-19 through the use of a powerful natural language processing model that has its foundation on SHAP and DistilBERT. After collecting a dataset of 984 COVID-19 claims and further augmenting this dataset through the implementation of reverse translation techniques, the authors were able to identify false information with an impressive level of accuracy. The results showed that, when it comes to identifying misleading data regarding COVID-19, the DistilBERT model performs better than traditional machine learning models. Furthermore, using SHAP explanations to improve model transparency in conjunction with an experimental investigation revealed notable outcomes. Participants' tendency to trust and share information significantly increased in these experimental settings with SHAP explanations; this finding emphasizes the effectiveness of explanatory approaches in raising the degrees of confidence and trust. In other words, the main purpose of this article is to provide an effective tool for detecting false information about COVID-19, raising an alarm signal about the serious impact that misinformation has, promoting trust models and, at the same time, increasing public confidence. The primary goal of the study conducted by Asr et al. [62] is to address the pressing issue of misleading information and fake news. In order to automatically identify inaccurate information, it encourages the application of text classification techniques and underlines the importance of using large, labeled datasets in order to establish reliable classifiers. The authors used both automatic and manual verification techniques for gathering datasets from a variety of sources, including Buzzfeed and Snopes. They utilized Latent Dirichlet Allocation for topic modeling for the purposes of achieving an understanding of the various types of news that have been extracted in these datasets. In order to effectively combat disinformation, the study draws attention to the dearth of trustworthy labeled data and encourages collaboration throughout the scientific community. The problem of identifying disinformation in online social networks has also been addressed by the author Zhang et al. [63]. They evaluated the efficacy of monitor placement in identifying misinformation using three realistic datasets with a significant number of nodes and connections from well-known sites including Twitter, Epinion, and Slashdot. The article's primary objective was to provide efficient placement techniques for monitors in order to reduce the overall number of monitors required to successfully identify misinformation in social networks. The outcomes from this research showed that, in comparison to other traditional approaches, the authors' strategies, which were based on sampling techniques and a probability-based approach, were shown to be positive. The study's primary conclusion was that social network monitor installation could play a major role in the efficient identification of misinformation and, consequently, reduce its spread across networks. The main focus of the study conducted by Baeth et al. [64] was to evaluate the accuracy of information, with priority on identifying disinformation, examine social behavior patterns using data gathered from Twitter, and evaluate user confidence on social networks. The analysis encompassed a number of methodologies, including the examination of social workflows, the computation of the positivity metric's distance, and the determination of weights and their ranking through the application of both the Fuzzy Analytic Hierarchy Process and the Analytic Hierarchy Process . Additionally, it also examines an artificial dataset with machine learning techniques to detect disinformation. The analysis's findings indicate that there are positive correlations between the number of active users and the distance from the positivity metric as well as between the distance from the positivity meter and the information originator's credibility. Furthermore, the quantity of people leaving negative feedback varies as well. The next article on the list of the most cited documents in the area of misinformation detection belongs to Hayawi et al. [65]. An innovative technique for spotting false information about the COVID-19 vaccination on Twitter, a well-known social media site, is presented in this research paper, since misinformation regarding vaccinations has become a serious issue from the time when the COVID-19 epidemic started, and this study attempts to address it. A sizable dataset of tweets was gathered for the investigation, and they are divided into two categories: general vaccination content and disinformation about vaccines. These tweets are classified using machine learning models such as XGBoost, LSTM, and BERT, and the results showed that with a 0.98 F1-score on the test data, BERT in particular was proven to be the most successful. This research has real-world implications due to the fact that it can help social media businesses police disinformation, detect social bots that spread false data, and raise public awareness of vaccination misinformation. It also suggests other paths for further exploration, such as multilingual tweet analysis to improve model performance, and contributes additional knowledge to our awareness of how to combat false information in the context of social media and public health. The last reviewed article on the list is written by Kumari et al. [66]. The authors aim to improve the process of detecting fake news on social media platforms. The authors examined the means through which two variables, namely novelty and emotion, could potentially be used to detect misleading information. In order to accomplish this, they developed a multitasking learning framework that handles these two elements as well as fake news recognition. Natural language processing techniques, which enable the extraction of information related to novelty and emotion from articles, were used in this investigation, together with neural networks to train and test the model's ability for recognizing false information. After this, experiments on different public datasets were carried out to validate the efficacy of the new identified framework, and the results demonstrated that this approach outperformed existing false news detection algorithms, particularly on the ByteDance platform, with a considerable improvement in accuracy. This suggests that techniques which include novelty and emotional variables in the detection process might be highly useful in fighting the spread of fake news on social media. Table 8 outlines some essential data about each of the 10 most globally cited documents, including the name of the first author, the year of the publication, the journal, along with the title, the main methods, techniques, steps used, the data analyzed, the purpose of the study, the goals, and objectives that authors want to achieve through the conducted research. Tackle the issue of inaccurate information and fake news, propose text classification as a method for automatic identification, emphasize the importance of large, labeled datasets, and promote cooperation within the scientific community in the fight against misleading data. News articles and text data collected from various sources. Improve the capacity to identify false information on social media by using information about novelty and emotion in news. Furthermore, by analyzing in a more detailed manner the data captured in Table 8, we notice that 4 out of 10 articles address the problem of misinformation detection in the case of the COVID-19 pandemic [57,59,61,65]. The techniques used are diverse, including machine learning techniques, deep learning techniques, deep neural networks, feature selection, classification models, topic modeling techniques, and the list goes on with many others. Regarding the data used in the analysis, 4 of the 10 most cited documents use data collected from the Twitter socialization platform [59,[63][64][65], while others take the data from other sources such as questionnaires [58] and forums [60]. --- Papers Brief Overview Considering the entire dataset, we have been interested in determining which are the most prominent life situations analyzed in the scientific literature that have captured the attention of the research community when discussing the misinformation detection. As a result, by considering all the 56 papers, it has been observed that health aspects retain the first position-counting for 33 papers, representing 55.35% of the dataset-with issues related to general health, occurrence of the COVID-19 pandemic, vaccines and vaccines in the context of the COVID-19 pandemic . Other issues that have been addressed are related to politics, personal issues, environment, science, sports, market, police, legislation, technology-4 papers , while the remainder of the papers put emphasis more on other aspects , paying less attention to the category of misinformation to which the proposed approach can be applied. Regarding the source of the misinformation, it has been observed that most of the papers have used social media as the data source , while fewer papers have used news -some of the listed papers have used a combination of social media information and news. Among the social media platforms, Twitter has been remarked as a preferred data source, accounting for 19 papers , followed by Weibo, its Chinese equivalent, with 5 papers . Other social media platforms used have been Facebook, Reddit, ByteDance, Epinion, and Slashdot . In terms of methodological approach, most of the papers have used classification methods based on machine learning techniques in order to detect misinformation. As a result, 32 papers have been identified as using machine learning, representing 57.14%. Fewer papers have provided a survey either on other papers dealing with misinformation detection or by asking individuals about their opinion regarding misinformation detection on various social media platforms . The remainder of the papers have proposed proofs of concepts, ontologies, greedy algorithms, blockchain, eye-tracking techniques, text and/or writing style analysis in order to address various misinformation issues or have provided proofs of concepts in connection with this subject . The papers listed in Table 9 are included in decreasing order of their total citations number. --- Words Analysis The primary objective of this section is to conduct an in-depth and systematic examination of titles, abstracts, keywords, and keywords' plus in order to identify the most frequently encountered terms used in the chosen papers. This thorough analysis is intended to give a deep comprehension of the research that has been carried out, the corresponding fields of study, the topics that are being discussed in the scientific community right now, as well as the preferred approaches, goals, and areas of attention. ✔ ✔ ✔ Table 10 includes the top 10 most frequent words in keywords plus, and, as it can be observed, most of them belong to the media and communication domain, suggesting that the main purpose of the extracted dataset collection is to detect the misinformation news phenomenon, especially related to the health area in the context of the pandemic: "social media"-6 occurrences; "credibility", "fake news", "information"-each with 5 occurrences; "classification", "communication", "media", "news"-each with 3 occurrences; "engagement", "health"-each with 2 occurrences. Table 11 brings to the fore the top 10 most frequent words in authors' keywords, based on the number of occurrences: "misinformation detection"-19, "COVID-19"-13, "misinformation"-13, "deep learning"-10, "fake news"-9, "machine learning"-9, "natural language processing"-8, "twitter"-6, "feature extraction"-5, "social media"-5. As expected, the extracted author's keywords provide a glimpse into the key aspects of the articles, being highlighted based on the fact that the papers explore the use of advanced technology, data analysis, and techniques like natural language processing to address the spread of misinformation, particularly in the context of the COVID-19 pandemic and on popular social media platforms like Twitter. Figure 15 illustrates an artistic visual depiction of the keywords plus and authors' keywords. The top 50 most frequently used significant and relevant terms found in the authors' articles have been carefully selected and colored, with the scope of enhancing the clarity and attractiveness of the analysis. The next analysis carried out in this study consisted of the extraction of the top 10 most frequent bigrams found in abstracts and titles. As anticipated, the "misinformation detection" bigram unquestionably asserts its top spot in the hierarchy based on the number of occurrences determined for both abstracts, 43, and titles, 11. The second place is occupied by the "social media" bigram, with 41 occurrences in abstracts and 8 in titles. For more information, kindly inspect Table 12. The next analysis carried out in this study consisted of the extraction of the top 10 most frequent bigrams found in abstracts and titles. As anticipated, the "misinformation detection" bigram unquestionably asserts its top spot in the hierarchy based on the number of occurrences determined for both abstracts, 43, and titles, 11. The second place is occupied by the "social media" bigram, with 41 occurrences in abstracts and 8 in titles. For more information, kindly inspect Table 12. The top 10 most frequent trigrams are highlighted in Table 13. The top 10 most frequent trigrams are highlighted in Table 13. In the case of abstracts, the foremost positions in the ranking are occupied by "natural language processing" , "fake news detection" , and "social media platforms" , while for the titles the most popular trigrams based on the number of occurrences are comprised of "online social networks" , and "covid-vaccine misinformation", "detecting covid-misinformation", "fake news detection", "natural language processing", each with 2 occurrences. Also from the trigram examination, as it was previously deduced in the earlier analysis, it results that the research carried out in the selected articles is related to the detection of misinformation using modern techniques, in the context of the COVID-19 pandemic. Furthermore, following the terms co-occurrence network in authors' keywords, it has been observed the connections depicted in Figure 16. As a result, four clusters have been identified: Considering the information in the four clusters, it can be observed that it matches the profile of the papers highlighted in Table 9. In terms of themes approached in the selected dataset, a thematic map has been created based on the author's keywords. The identified themes are divided into four categories: motor themes, niche themes, emerging or declining themes, and basic themes, as depicted in Figure 17. As it can be observed, the highlighted motor themes refer to the use of deep learning algorithms, feature extraction, fake news, and natural language processing, with the health misinformation theme being placed at the border of niche themes and motor themes. Among the basic themes, one can identify themes related to healthcare, COVID-19, and the use of machine learning, while as emerging or declining themes, rumor detection, social media, and fake news detection have been identified . The division of the themes among the four categories reflects the distribution of the papers in the dataset and the issues previously highlighted in the analysis conducted in this paper in terms of used methods and category of misinformation. Further dividing the dataset into two periods according to the change in the number of papers depicted in Figure 1-where one can observe an increase in the number of papers starting from 2019-namely 2016-2018 and 2019-2022, the thematic for each time slice can be observed in Figures 18 and19. Information 2024, 15, x FOR PEER REVIEW 33 of 44 Also, by comparing the results in the two periods, it can be observed the rise of the fake news theme from a niche/emerging theme to a motor theme in the second period of time . As a result, it can be observed that, for the first slice period , online social networks have been identified as a basic theme, while the fake news were at the borderline between niche and emerging/declining themes. On the other hand, for the second slice period , the occurrence of the COVID-19 pandemic is more evident, being listed as one of the motor themes. Also, by comparing the results in the two periods, it can be observed the rise of the fake news theme from a niche/emerging theme to a motor theme in the second period of time . --- Mixed Analysis A rigorous mixed analysis is performed in this section, making use of the power of the three-field plots and the knowledge acquired from the discussions that have come before, to point out the complex connections between a variety of categories, including countries, authors, journals, affiliations, and keywords. Figure 20 depicts a three-field plot for an in-depth examination, carried out to establish a few noteworthy trends and connections between the top 20 entities in the categories of countries , authors , journals . As predicted, the findings demonstrate that India is the dominant affiliation for famous writers, with Alsmadi I. holding the top position. Moreover, based on the data provided, the journal Information Processing & Management has the greatest number of published articles in the field of misinformation detection. Additionally, throughout the community of authors considered, it became noticeable that numerous writers had collaborations throughout the globe, demonstrating that there were multiple worldwide research partnerships in the analyzed area of misinformation detection. Also, an increasing pattern becomes visible whereby an important percentage of researchers choose to publish their study results in multiple scientific journals rather than merely in a single one. The next three-field plot is captured in Figure 21, having the purpose of bringing to the fore the examination conducted to establish connections between affiliations , authors , and keywords . before, to point out the complex connections between a variety of categories, including countries, authors, journals, affiliations, and keywords. Figure 20 depicts a three-field plot for an in-depth examination, carried out to establish a few noteworthy trends and connections between the top 20 entities in the categories of countries , authors , journals . As predicted, the findings demonstrate that India is the dominant affiliation for famous writers, with Alsmadi I. holding the top position. Moreover, based on the data provided, the journal Information Processing & Management has the greatest number of published articles in the field of misinformation detection. Additionally, throughout the community of authors considered, it became noticeable that numerous writers had collaborations throughout the globe, demonstrating that there were multiple worldwide research partnerships in the analyzed area of misinformation detection. Also, an increasing pattern becomes visible whereby an important percentage of researchers choose to publish their study results in multiple scientific journals rather than merely in a single one. The next three-field plot is captured in Figure 21, having the purpose of bringing to the fore the examination conducted to establish connections between affiliations , authors , and keywords . Upon a brief inspection of the most popular keywords used in the extracted data collection set, it can be noted that all of them revolve around the basic idea of developing technologies and methods to effectively identify and address misinformation and sentiments in the online environment, especially in the context of the COVID-19 pandemic. Regarding affiliations, Symbiosis International University holds the leadership position, succeeded by other famous esteemed universities. It is also critical to draw attention to another crucial finding that this figure makes clear: a substantial percentage of the selected authors show up to be affiliated with foreign universities, which is a factor that significantly influences the growth of international collaborations. Authors who had no affiliation with any of the universities illustrated in the picture are also included below. For more information, please see Figure 21. --- Discussions The current research investigation uses bibliometrics to identify major trends, viewpoints, insights, and perspectives in the field of misinformation detection analysis, placing attention on key authors and popular research publications, highlighting the outstanding amount of literature available on this subject. In order to achieve this, a collection of 56 articles was extracted and analyzed, from the WoS platform, by following Upon a brief inspection of the most popular keywords used in the extracted data collection set, it can be noted that all of them revolve around the basic idea of developing technologies and methods to effectively identify and address misinformation and sentiments in the online environment, especially in the context of the COVID-19 pandemic. Regarding affiliations, Symbiosis International University holds the leadership position, succeeded by other famous esteemed universities. It is also critical to draw attention to another crucial finding that this figure makes clear: a substantial percentage of the selected authors show up to be affiliated with foreign universities, which is a factor that significantly influences the growth of international collaborations. Authors who had no affiliation with any of the universities illustrated in the picture are also included below. For more information, please see Figure 21. --- Discussions The current research investigation uses bibliometrics to identify major trends, viewpoints, insights, and perspectives in the field of misinformation detection analysis, placing attention on key authors and popular research publications, highlighting the outstanding amount of literature available on this subject. In order to achieve this, a collection of 56 articles was extracted and analyzed, from the WoS platform, by following some filtering rules in the initial phase. Moreover, the increase in citations clearly proves that there was definitely a rise in interest from writers in this topic during most of the period under consideration time, namely 2016-2022. The study encompassed numerous facets, including the main information about the data, the author appearances, the annual scientific production, the annual average article citations per year evolution, the most relevant sources, the Bradford's law on source clustering, the journals' impact based on H-index, the sources' growth, the authors who published articles in the area of the analyzed research domain, their countries of origin, and affiliations with universities. In terms of sources, it has been observed that some of the journals listed as the top contributors to the field of misinformation detection-either by considering the number of published papers or by considering their impact-have been the same as in other bibliometric works conducted on related areas. For example, the IEEE Access journal, which occupies the first position in the current analysis based on the number of published papers and the second position based on impact, has been listed as one of the top journals for publishing works in areas of social media research in the age of COVID-19 [112], deep learning in the context of sentiment analysis [113], sentiment analysis for the COVID-19 vaccines [114], sentiment analysis in times of COVID-19 [115], and COVID-19 vaccination misinformation [40]. Furthermore, the International Journal of Advanced Computer Science and Applications-which retains the third, respectively the fourth position in the present paper based on the number of papers, respectively based on the impact-has been listed among the top journals by Sanchez-Nunez et al. [116] in a paper featuring a bibliometric analysis on sentiment analysis, opinion mining, and emotion understanding and by Sandu et al. [115] in a paper dealing with sentiment analysis in times of COVID-19. Also, the International Journal of Environmental Research and Public Health has been listed as a topcontributor journal in the bibliometric studies in the area of social media in the age of COVID-19 [112], health-related misinformation in social media [39], and sentiment analysis in times of COVID-19 [115], while Social Network Analysis and Mining has been listed among the top contributors by Yu and Munoz-Justicia [117], who have conducted a bibliometric analysis in the area of Twitter-related studies. The fact that certain journals identified as top contributors to the field of misinformation detection also appear prominently in other bibliometric studies covering similar areas further underscores the significance and representativeness of these journals within the broader research domain associated with misinformation detection. Regarding the affiliations of the authors who have been listed as top contributors to the field of misinformation detection, it has been observed that, even in this case, some of the universities have been listed as top contributors by other bibliometric studies in related fields. For example, King Saud University, listed as a top contributor for the misinformation detection, has also been listed as a first contributor for the studies published in the area of sentiment analysis in times of COVID-19 [115] and a top-3 contributor for the studies in the area of sentiment analysis in marketing [118]. Considering the countries with the highest contribution to the misinformation detection, the top-5 list is comprised of the USA, India, China, Spain, and the UK. By analyzing other bibliometric papers, it has been observed that the abovementioned countries are also listed among the top contributors for the social media research in the age of COVID-19 [112], COVID-19 vaccination misinformation [40], health-related misinformation in social media [39], and sentiment analysis in times of COVID-19 [115]. Furthermore, it has been observed that both the USA and China have assumed top positions regarding the contribution to the various fields such as investors sentiments [119], network public opinion [120], sentiment analysis in library and information science [121], social media sentiment in the stock market [122], and the tourism industry [123]. Thus, it can be observed that, in the current scientific literature, there are many articles that conducted bibliometric studies as it is considered a strong analysis method, but all the papers have different focuses, addressing a large variety of subjects, including opposite areas such as health, tourism, and public opinion. By analyzing our results obtained in this research with other results from existing bibliometric studies, this helped us to draw some conclusions and discover interesting insights, such as observing the most popular journal and the country with the highest contribution in this field. Compared to existing bibliometric studies carried out by other researchers, the present study approaches the extremely current and important topic of misinformation detection in the world of technology, approaching a rigorous methodology. Using the well-known WoS platform that hosts an impressively large collection of articles and by pre-establishing well-defined criteria in choosing the collected articles, this bibliometric analysis, unlike other existing papers, ensures the transparency of methodological decisions within the data selection process. For example, the choice of a limited time frame, 2016-2022, suggests the desire to focus especially on recent studies to reveal the most current aspects regarding emerging trends. Also, unlike other papers, the present study pays substantial attention to the existing literature. In order to give readers a wider perspective on the misinformation detection area, the top 10 most cited articles in this field were extracted and reviewed, being included in the analysis a short summary of each of them, offering insights into the data, methods employed, and the purpose behind the analysis to enhance the comprehension of this subject. Thus, it has been observed that half of the papers included in top-10 papers based on number of citations have addressed themes related to COVID-19 pandemic and COVID-19 vaccination. Moreover, half of the papers included in the top 10 most cited papers have extracted the data used in their studies from Twitter, while 6 of the 10 papers have used an approach based on machine learning when dealing with misinformation detection. This trend-related to the main misinformation category, preferred source for data, and preferred approach-has been further observed even in the remainder of the papers included in the dataset, highlighting their importance to the misinformation detection area. Furthermore, contrasting other articles in this area, this paper has a well-defined structure, addressing not only common aspects such as statistics about authors, journals, affiliations, and countries. It also includes valuable graphs and visual representations revealing significant information about collaborations, complex analysis of words, word clouds, co-occurrence network, thematic maps, three-field plots, and many other aspects that are not found in most of the published articles. --- Limitations Apart from these valuable and crucial findings, it is also important to address an essential topic and shape the discourse toward another perspective: limitations of the research. Prior to anything else, it is necessary to highlight that the scientific articles used for research were completely collected from the WoS database. This choice might be interpreted as a restriction because it could possibly have omitted articles that are not included in this specific database. On the other hand, as presented in Section 2, in the scientific literature, there seems to be a preference for this database. In addition to this, the use of specifically chosen keywords for article selection have influenced the composition of the dataset, as the dataset is highly dependent on the used keywords. Language constitutes another noteworthy limitation. The study exclusively concentrated on publications written in English. However, as depicted in Table 1, even with the application of the language exclusion criterion, the number of papers in the dataset remains unchanged, as all the papers related to misinformation detection were authored in English. Moreover, the inquiry was confined to papers specifically categorized as articles on the WoS platform. While this limitation led to a notable reduction in the number of articles included in the dataset, the chosen approach ensured that the retained papers were of high relevance, encompassing new and original research. This selection not only enhanced the value of the information within the dataset but also provided a consistent basis for a meaningful comparison among the included articles, as highlighted in Section 2.1. --- Conclusions In conclusion, the main objective of this research was to bring attention to bibliometric analysis in the field of misinformation detection and highlight the insights and results discovered based on the existing literature. The lightning-fast development of technology and the speed at which news circulates in today's world contributed to a context in which misinformation may spread rapidly and reach a wide audience. This reality underlines the rising necessity to detect and combat misinformation, along with developing new strategies in order to ensure the accuracy of information and prevent possible adverse consequences on society, ranging from trust in news sources to actual implications in areas such as public health, politics, and many more. As a result of the bibliometric analysis, we extracted the articles with the highest impact in the field of misinformation detection, determined by the number of citations. Upon analyzing the top 10 most cited papers, a noteworthy observation emerged-half of them focused on themes related to misinformation detection during the COVID-19 pandemic and COVID-19 vaccination. Additionally, two papers addressed misinformation in health-related issues. In essence, the top 10 most cited papers highlighted a predominant research interest in misinformation detection within the health and healthcare domain. A broader examination of the entire dataset reinforced this trend, revealing that 55.35% of the selected papers were primarily concerned with misinformation detection in the health and healthcare sector-this idea has been further observed when analyzing the co-occurrence network for the terms in author's keywords, where "COVID-19" and "healthcare" occurred among extracted terms, or by the bigrams identified in titles: "covidmisinformation", "health misinformation", and "vaccine misinformation". The remaining papers delved into a diverse range of topics, including misinformation detection in politics, personal matters, environment, science, sports, market, police, legislation, or technology. However, it is important to note that some papers did not specifically focus on the area of application for misinformation detection; instead, they concentrated on discussing methodological or modeling aspects related to the subject. In this context, we conducted an analysis of the methodological aspects presented in the selected papers. Notably, among the top 10 most cited papers, 6 employed an approach based on machine learning for misinformation detection. This prevalent trend, pertaining to the use of the machine learning approach, was consistently observed throughout the entire dataset. It underscores the significant role of machine learning in the field of misinformation detection, emphasizing its importance as a preferred and effective approach in this domain. Concerning the source of misinformation in the entire dataset, a predominant trend emerged, with the majority of papers relying on social media as their primary data source . In contrast, fewer papers were drawn from news sources, while some studies opted for a combination of social media information and news. Notably, Twitter emerged as the most favored social media platform, featured in 19 papers, followed by Weibo, its Chinese counterpart, with 5 papers. The role played by Twitter in the misinformation detection papers as a primary source for the data has been further highlighted by the appearance of the "Twitter" term in the co-occurrence network for the terms in author's keywords. In terms of the most prominent authors, the contribution of Barve Y and Saini JR has been highlighted-each of the mentioned authors contributed with 3 papers. Other notable authors with 2 published papers have been Alsmadi I, Apostol ES, Ashok N, Ekbal A, Ghosal T, Kotecha K, Kumari R, Truica CO, and Zhou F. Concerning the preferred journals for misinformation detection, IEEE Access and Information Processing & Management stand out, not only in terms of the quantity of published papers but also in terms of impact, as indicated by their H-index. As discussed in the corresponding section, the majority of journals that have featured papers in the realm of misinformation detection have consistently been chosen as the primary outlets even for works covering similar subjects. This emphasizes the significant and consistent contributions of these journals to the field. King Saud University has been identified as the leading contributor in terms of published papers in the field of misinformation detection. When it comes to countries, the leading contributors are the USA, India, and China. It is noteworthy to mention that the presence of these countries in the top three contributors is not surprising, given their historically significant contributions across various domains related to social media and sentiment analysis. Last, the bibliometric analysis provided insights on the evolution of trends in misinformation detection, showing the rise of the COVID-19 misinformation theme as a motor theme for the 2019-2022 period and the evolving path followed by the "fake news" theme from an emerging theme in the 2016-2018 period to a motor theme in the 2019-2022 period. Taking all of this into consideration, the paper is highly useful for specialized literature and beyond, as it attempts to raise awareness about the identification of misinformation. Everyone should be conscious of how serious this issue is and take appropriate actions to prevent any potentially severe consequences. From the desire to illustrate the practical applicability of the insights gained from research, we want to bring to the fore some strategies that can reduce or even combat the spread of false information on social networks. It is recommended to use the personal filter, double-check the accuracy of the sources, share only the information you have complete confidence in, use diverse platforms for reading the news, as well as utilize a variety of tools that aim to provide a more accurate assessment, such as Google Fact Check Explorer, NewsGuard, PolitiFact, Snopes, and others. The results obtained in the study show significant details, such as the country with the highest number of articles published in the area of misinformation detection, the relevant researchers, the popular journals, etc., which directs the researchers to the most appropriate decisions in choosing collaboration partners in this field. At the same time, the results obtained from bibliometric studies can influence the decisions of the authorities regarding the funding of researchers and can contribute to increasing the visibility of research and international recognition. Regarding future work, future research in this field may aim to overcome the aforementioned limitations identified in this study. Additionally, researchers could explore other dimensions related to disinformation detection, such as detecting fake news or disinformation, and compare the findings with those obtained for disinformation detection. This comparative analysis could provide valuable insights into the nuances and effectiveness of different strategies for detecting different types of misleading information. Furthermore, future researchers can start from the study carried out in this article, to develop a tool for detecting false information as efficiently as possible, using, for example, machine learning algorithms and natural language processing methods. Addressing these aspects could contribute to a more comprehensive understanding of the challenges and opportunities in the broader landscape of information integrity and trustworthiness. --- Data Availability Statement: Data are contained within the article. ---
The proliferation of misinformation presents a significant challenge in today's information landscape, impacting various aspects of society. While misinformation is often confused with terms like disinformation and fake news, it is crucial to distinguish that misinformation involves, in mostcases, inaccurate information without the intent to cause harm. In some instances, individuals unwittingly share misinformation, driven by a desire to assist others without thorough research. However, there are also situations where misinformation involves negligence, or even intentional manipulation, with the aim of shaping the opinions and decisions of the target audience. Another key factor contributing to misinformation is its alignment with individual beliefs and emotions. This alignment magnifies the impact and influence of misinformation, as people tend to seek information that reinforces their existing beliefs. As a starting point, some 56 papers containing 'misinformation detection' in the title, abstract, or keywords, marked as "articles", written in English, published between 2016 and 2022, were extracted from the Web of Science platform and further analyzed using Biblioshiny. This bibliometric study aims to offer a comprehensive perspective on the field of misinformation detection by examining its evolution and identifying emerging trends, influential authors, collaborative networks, highly cited articles, key terms, institutional affiliations, themes, and other relevant factors. Additionally, the study reviews the most cited papers and provides an overview of all selected papers in the dataset, shedding light on methods employed to counter misinformation and the primary research areas where misinformation detection has been explored, including sources such as online social networks, communities, and news platforms. Recent events related to health issues stemming from the COVID-19 pandemic have heightened interest within the research community regarding misinformation detection, a statistic which is also supported by the fact that half of the papers included in top 10 papers based on number of citations have addressed this subject. The insights derived from this analysis contribute valuable knowledge to address the issue, enhancing our understanding of the field's dynamics and aiding in the development of effective strategies to detect and mitigate the impact of misinformation. The results spotlight that IEEE Access occupies the first position in the current analysis based on the number of published papers, the King Saud University is listed as the top contributor for the misinformation detection, while in terms of countries, the top-5 list based on the highest contribution to this area is made by the USA, India, China, Spain, and the UK. Moreover, the study supports the promotion of verified and reliable sources of data, fostering a more informed and trustworthy information environment.
Introduction Breast cancer is the most prevalent type of cancer worldwide, with 2.2 million cases reported in 2020, making it the leading cause of death among women. Specifically, 685,000 deaths were recorded in 2020 because of this disease, according to the latest data by the World Health Organization . It is estimated that one in every 12 women will have breast cancer during her lifetime [1], with the highest incidence being in those of 45-65 years old, when hormonal changes occur in the pre-and post menopause period [2]. Although the average survival rate for this cancer at 5 years is 89.2% overall, the stage at which it is diagnosed has a great influence, varying from 98% to 24% survival depending on whether it is diagnosed at stage I or stage IV, respectively [3]. According to these considerations, and assuming the impact that breast cancer has in women's lives, we can affirm that it is a public health problem worldwide. However, breast cancer mortality in high-income countries is decreasing thanks to research and improved treatments, together with the increased implementation of screening and early-diagnosis programs. In Europe, a breast cancer-screening program consists of performing a mammography every 2 years on the asymptomatic women aged between 50 and 69 years old. Mammography is the most widely available test to diagnose breast cancer in asymptomatic and localized stages. In Spain, it has been shown that this screening modality reduced breast cancer mortality by 9% to 15% [4]. However, despite the proven effectiveness of this intervention, low levels of health literacy and inadequate knowledge about cancer screening, reported among women belonging to vulnerable populations, represent a serious concern. In fact, it is very common for these population groups to do not know what a cancer screening consists of, where accessing it or the possible consequences [5][6][7]. As a result, there are disparities in 5-year survival data of 90% in high-income countries versus 40-66% survival in low-income countries. The highest percentage of age-standardized deaths from breast cancer is in countries from Africa, where up to 50% of deaths from breast cancer occur in women aged under 50 years old [1]. In the United States , lack of medical insurance [5][6][7][8][9][10] appears as the main barrier to adherence or follow-up to cancer-screening programs for this disease in women belonging to certain population groups. Medical insurance financially protects the affected women from the multiple expenses that may arise from participation in this program or, even more, from the diagnosis of a suspected breast neoplasia. Some studies show a great lack of information in low-income populations, who admit to not having responded to the offer for cancer screening because they do not know what it consists of and are unaware of the disease risk factors, signs or symptoms [5][6][7][8][9][10]. Advani et al. insist on the need to improve the means of disseminating information to women, especially to those belonging to vulnerable groups [11]. The need for health education, particularly in vulnerable populations, promoting positive attitudes and behavioral changes among women would be effective in achieving better results in cancer-screening programs [10]. Other obstacles that appear in most of the studies are psychological barriers, mobility difficulties, language and cultural barriers, lack of time and/or the prioritization of other health issues [5][6][7][8][9][10][11][12]. The discomfort suffered by women in relation to being treated or examined by a male doctor is reported as a barrier in some studies [6,7,11,13]. Some of these women also reported that they would feel more comfortable being attended by female doctors, as well as an overall lack of confidence in the health system, based on personal experience and negative experiences reported in the media or through their own experiences [7]. In addition, feeling discriminated on the basis of their race and/or ethnicity also increases distrust in health systems. In an interview-based survey, Miller et al. [6] reported that Asian or Black women had been treated worse than white women in the United States . On the other hand, a good doctor-patient relationship is considered a positive factor for adherence, as it generates trust, comfort, and compliance with follow-up, which facilitate communication and participation in cancer-screening and early-detection programs [6,7]. Cancers 2023, 15, 604 3 of 14 Factors such as a previous history of breast cancer associated with participation in such screenings [5], a positive attitude toward the possible early diagnosis of the disease [5,9], family support [7,8,13] and being married [7,8] have been related to better adherence and follow-up. Being informed and advised by a health professional about the importance of this early cancer diagnosis has stimulated higher participation in breast cancer screening among women [7,11,13]. The abovementioned factors highlight the importance of keeping health professionals informed on the cultural, linguistic, and social differences in a target population for cancer screening, to be able to adapt and adopt customized prevention campaigns [11]. Situations such as a family history of breast cancer or other cancers, together with a personal history of early menarche, obesity, and other risk factors, do not seem to have shown evidence of greater adherence [5]. Age was shown to be a controversial factor as a variable for adherence to screening [8]. The WHO aims to achieve a 2.5% reduction in annual deaths from breast cancer, avoiding 25% of deaths by 2030. The success of screening programs is conditioned mainly by the rate of participation, so it is vital to encourage all populations to participate in them [14]. However, there are certain populations that could be at a disadvantage in properly participating in breast cancer screening. Hence, we review the psychosocial, socioeconomic, and cultural factors that interfere with adherence to breast cancer-screening programs in vulnerable populations owing to their race and/or ethnicity in order to obtain a global vision of participation and knowledge about the program, suggesting recommendations to reduce possible inequities. --- Materials and Methods PubMed Central and Scopus are two of the widest databases consulted by medical researchers, as they are comprehensive and facilitate researchers' finding relevant and authoritative research. We selected both databases for our search. We chose the latest scientific reports on the topic for our research, including studies published in the past 5 years, from 1 September 2016, to 1 December 2021. The process followed for the selection of the articles was the same for both databases. The search strategy was performed using MeSH and DeCS termcontrolled language. The first step in developing the search strategy was to group a series of descriptors that made the results fit the main topic of the study. The Boolean operators AND, OR, parentheses and quotation marks were, then used to elaborate the following strategy: Breast Neoplasm AND AND AND . The descriptor "Breast Neoplasm" was changed to "Breast Cancer" in the Scopus database because it offered a greater number of results. These strategies ended up with 305 publications that met the requirements: 181 studies in the PubMed Central database and 124 results in the Scopus database. The eligible criteria included original articles with quantitative research of an observational or experimental design, that were written in English or Spanish, that were about breast cancer screening in women over 18 years old . We excluded studies that were focused on predisposing genetic factors, were based on cancer therapy, analyzed breast cancer in terms of mortality and/or survival and were in books, conference abstracts, narrative review articles, meta-analyses, letters to editors or case studies . A researcher was responsible for the first search. However, when she hesitated on the inclusion or exclusion of some article for the research, she consulted with another researcher to make definitive decisions. To assess the risk of bias in the included studies, a third, independent researcher evaluated the proper inclusion of the selected papers in the review. The article-selection process is detailed in Scheme 1. The quality of the articles was checked by selecting articles published in journals indexed in the Journal Citation Report and/or Scimago Journal & Country Rank , including the impact factor of the year of publication. The articles were also evaluated Scheme 1. Flowchart of the article-selection process. The quality of the articles was checked by selecting articles published in journals indexed in the Journal Citation Report and/or Scimago Journal & Country Rank , including the impact factor of the year of publication. The articles were also evaluated using the critical-reading program Critical Appraisal Skills Programme España . The questions included in this program analyze the internal validity of the study in terms of methodological adequacy and accuracy. The three main questions that this questionnaire aims to answer are as follows: are the results valid, what are the results, and are they applicable in your setting? In total, 17 original publications were included in our research. --- Results The 17 studies included in our review are detailed in Table 1, along with their main results. Among patients with a lower risk of developing breast cancer , non-Hispanic white women were 62% more likely than nonwhite women to undergo MRI . Of these, those with higher levels of education , and especially those with academic degrees , were more likely to receive MRI. Women who had received an annual health examination were more likely to participate in cervical and breast cancer-screening programs, compared with those who did not receive screening-with the exception of Hispanic women, in whom this relationship was not observed. Hong et al. [29]/2018/USA BMC Women's Health Factors affecting trust in healthcare among middle-aged to older Korean American women A longer stay in the US increases the level of trust in the health system . The feeling of discrimination causes distrust in the health system . Acculturation was related to a higher level of trust in healthcare providers . --- Adherence to Breast Cancer-Screening Programs Levels of adherence to breast cancer-screening program are low in vulnerable populations, especially in women of Black or African American origin status [15,18,19,21,24]. Some common barriers that appear in most studies regarding nonadherence are not having an annual health checkup [22,26,28], belonging to a Black community [15,18,19,21,24], low level of education [15,19,25,27,31], low income and low socioeconomic status [16,18,19,23,24,27], lack of private health insurance [21,25,30] and the presence of medical mistrust and a health information gap [22,24,29,30]. Being single [17,26], being a foreigner [16,17,29] or not having a family/personal history of cancer [25,30,31] have also been related to lower adherence, in some studies. --- Race and/or Ethnicity A common factor related to a lower level of adherence to breast cancer screening is determined by the race and/or ethnicity of the women participating. There are multiple studies that have analyzed this barrier [15,18,19,21,24], which are reported in the 47% of the total articles researched , which correlate race/ethnicity and country of birth as an impediment to the correct coverage of this screening program. The articles compare adherence in non-Hispanic white women with that in women of other ethnicities/races, as represented in Figure 1. Cancers 2023, 15, 604 9 of 16 --- Adherence to Breast Cancer-Screening Programs Levels of adherence to breast cancer-screening program are low in vulnerable populations, especially in women of Black or African American origin status [15,18,19,21,24]. Some common barriers that appear in most studies regarding nonadherence are not having an annual health checkup [22,26,28], belonging to a Black community [15,18,19,21,24], low level of education [15,19,25,27,31], low income and low socioeconomic status [16,18,19,23,24,27], lack of private health insurance [21,25,30] and the presence of medical mistrust and a health information gap [22,24,29,30]. Being single [17,26], being a foreigner [16,17,29] or not having a family/personal history of cancer [25,30,31] have also been related to lower adherence, in some studies. --- Race and/or Ethnicity A common factor related to a lower level of adherence to breast cancer screening is determined by the race and/or ethnicity of the women participating. There are multiple studies that have analyzed this barrier [15,18,19,21,24], which are reported in the 47% of the total articles researched , which correlate race/ethnicity and country of birth as an impediment to the correct coverage of this screening program. The articles compare adherence in non-Hispanic white women with that in women of other ethnicities/races, as represented in Figure 1. Black race/ethnicity is the one mentioned in the highest number of articles as a barrier to adherence , followed by Hispanic , Asian and foreign status . Black race/ethnicity is the one mentioned in the highest number of articles as a barrier to adherence , followed by Hispanic , Asian and foreign status . If we focus on the data of non-Hispanic white women compared with Black women, the latter show a lower frequency of screening mammography [19], a higher probability of reporting barriers [18] and higher rates of late diagnosis [20]. In addition, the rate of discrimination was five times higher in Black and Hispanic women than in white women [21]. --- Socioeconomic Level, Lack of Resources and Lack of Private Health Insurance Low income and a lack of socioeconomic resources [16,18,19,23,24,27] appear as common barriers to adherence in six of the researched studies, which underlines the weight of this factor for adherence to a breast cancer-screening program. Figure 2 shows the main variables related to socioeconomic level that influence adherence to a breast cancer-screening program. Cancers 2023, 15, 604 10 of 16 If we focus on the data of non-Hispanic white women compared with Black women, the latter show a lower frequency of screening mammography [19], a higher probability of reporting barriers [18] and higher rates of late diagnosis [20]. In addition, the rate of discrimination was five times higher in Black and Hispanic women than in white women [21]. --- Socioeconomic Level, Lack of Resources and Lack of Private Health Insurance Low income and a lack of socioeconomic resources [16,18,19,23,24,27] appear as common barriers to adherence in six of the researched studies, which underlines the weight of this factor for adherence to a breast cancer-screening program. Figure 2 shows the main variables related to socioeconomic level that influence adherence to a breast cancerscreening program. Low income is the variable that is present in most of the studies analyzed, and it is closely related to the lack of private health insurance and to unemployment . Participants with a higher income level showed a 7.1% higher participation rate [27]. Furthermore, when comparing low-income women with those of moderate or high income , the latter two are less likely to report barriers to participation in this screening [18]. Another barrier reported by women was the transportation difficulties they experience to reach their corresponding health service facility, where women who have this as a barrier are 26.4% less likely to attend the screening [21]. Another factor common among several of the articles analyzed [21,25,30] is the lack of private health insurance. Having medical insurance is related to greater adherence to mammography [25], a probability three times higher [21] than those women who do not have it, and it is also a factor that favors women's reporting fewer barriers to adherence to a screening program when they are asked about it [24]. --- Family and Individual Factors Having a family or personal history of cancer and being married or of older age become protective factors for adherence in women. Having a high level of education; having good local language speaking ability; and knowing about the program are all associated with higher levels of adherence, as shown in Table 3. Low income is the variable that is present in most of the studies analyzed, and it is closely related to the lack of private health insurance and to unemployment . Participants with a higher income level showed a 7.1% higher participation rate [27]. Furthermore, when comparing low-income women with those of moderate or high income , the latter two are less likely to report barriers to participation in this screening [18]. Another barrier reported by women was the transportation difficulties they experience to reach their corresponding health service facility, where women who have this as a barrier are 26.4% less likely to attend the screening [21]. Another factor common among several of the articles analyzed [21,25,30] is the lack of private health insurance. Having medical insurance is related to greater adherence to mammography [25], a probability three times higher [21] than those women who do not have it, and it is also a factor that favors women's reporting fewer barriers to adherence to a screening program when they are asked about it [24]. --- Family and Individual Factors Having a family or personal history of cancer and being married or of older age become protective factors for adherence in women. Having a high level of education; having good local language speaking ability; and knowing about the program are all associated with higher levels of adherence, as shown in Table 3. Having a personal and/or family history of cancer has been related to better knowledge and awareness of this health problem and with early detection of future relapses [25,30,31]. Being married or in a couple has also been related to higher adherence to these programs [17,25,26,30]. An et al. [26] observed that being married is related to a higher level of awareness of breast cancer-screening programs . Shon et al. [17] concluded that the odds of never having undergone mammography were higher in unmarried women . Older age has also been associated with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27,31] are risk factors for adherence to the screening program. In contrast, high educational level and knowledge of the screening are strongly associated with higher participation. Lee et al. [31] highlight that women with a school diploma or academic degree showed higher levels of mammography use, as did those who had heard of the screening program . Finally, having a good Englishspeaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast cancer screening between women and their confidence and involvement in healthcare systems. Having a personal and/or family history of cancer has been related to better knowledge and awareness of this health problem and with early detection of future relapses [25,30,31]. Being married or in a couple has also been related to higher adherence to these programs [17,25,26,30]. An et al. [26] observed that being married is related to a higher level of awareness of breast cancer-screening programs . Shon et al. [17] concluded that the odds of never having undergone mammography were higher in unmarried women . Older age has also been associated with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27,31] are risk factors for adherence to the screening program. In contrast, high educational level and knowledge of the screening are strongly associated with higher participation. Lee et al. [31] highlight that women with a school diploma or academic degree showed higher levels of mammography use, as did those who had heard of the screening program . Finally, having a good Englishspeaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast cancer screening between women and their confidence and involvement in healthcare systems. Having a personal and/or family history of cancer has been related knowledge and awareness of this health problem and with early detection of f lapses [25,30,31]. Being married or in a couple has also been related to higher ad to these programs [17,25,26,30]. An et al. [26] observed that being married is rel higher level of awareness of breast cancer-screening programs . Older age has also been as with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22, are risk factors for adherence to the screening program. In contrast, high educatio and knowledge of the screening are strongly associated with higher participatio al. [31] highlight that women with a school diploma or a degree showed higher levels of mammography use, as did th had heard of the screening program . Finally, having a good speaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about brea screening between women and their confidence and involvement in healthcare s Having a personal and/or family history of cancer has been related to better knowledge and awareness of this health problem and with early detection of future relapses [25,30,31]. Being married or in a couple has also been related to higher adherence to these programs [17,25,26,30]. An et al. [26] observed that being married is related to a higher level of awareness of breast cancer-screening programs . Shon et al. [17] concluded that the odds of never having undergone mammography were higher in unmarried women . Older age has also been associated with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27,31] are risk factors for adherence to the screening program. In contrast, high educational level and knowledge of the screening are strongly associated with higher participation. Lee et al. [31] highlight that women with a school diploma or academic degree showed higher levels of mammography use, as did those who had heard of the screening program . Finally, having a good Englishspeaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast cancer screening between women and their confidence and involvement in healthcare systems. Having a personal and/or family history of cancer has been related to better knowledge and awareness of this health problem and with early detection of future relapses [25,30,31]. Being married or in a couple has also been related to higher adherence to these programs [17,25,26,30]. An et al. [26] observed that being married is related to a higher level of awareness of breast cancer-screening programs . Shon et al. [17] concluded that the odds of never having undergone mammography were higher in unmarried women . Older age has also been associated with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27,31] are risk factors for adherence to the screening program. In contrast, high educational level and knowledge of the screening are strongly associated with higher participation. Lee et al. [31] highlight that women with a school diploma or academic degree showed higher levels of mammography use, as did those who had heard of the screening program . Finally, having a good Englishspeaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast cancer screening between women and their confidence and involvement in healthcare systems. Having a personal and/or family history of cancer has been related to better knowledge and awareness of this health problem and with early detection of future relapses [25,30,31]. Being married or in a couple has also been related to higher adherence to these programs [17,25,26,30]. An et al. [26] observed that being married is related to a higher level of awareness of breast cancer-screening programs . Shon et al. [17] concluded that the odds of never having undergone mammography were higher in unmarried women . Older age has also been associated with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27,31] are risk factors for adherence to the screening program. In contrast, high educational level and knowledge of the screening are strongly associated with higher participation. Lee et al. [31] highlight that women with a school diploma or academic degree showed higher levels of mammography use, as did those who had heard of the screening program . Finally, having a good Englishspeaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast cancer screening between women and their confidence and involvement in healthcare systems. Having a personal and/or family history of cancer has been knowledge and awareness of this health problem and with early dete lapses [25,30,31]. Being married or in a couple has also been related to to these programs [17,25,26,30]. An et al. [26] observed that being mar higher level of awareness of breast cancer-screening programs . Older age has als with higher participation rates [31]. However, the lack of health education and low educational level are risk factors for adherence to the screening program. In contrast, high and knowledge of the screening are strongly associated with higher pa al. [31] highlight that women with a school diploma showed higher levels of mammography use had heard of the screening program . Finally, havin speaking ability [25] is a determinant factor for better adherence (p = 0. --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information a screening between women and their confidence and involvement in he Having a personal and/or family history of cancer knowledge and awareness of this health problem and with e lapses [25,30,31]. Being married or in a couple has also been to these programs [17,25,26,30]. An et al. [26] observed that b higher level of awareness of breast cancer-screening program et al. [17] concluded that the odds of never having undergone in unmarried women . Older a with higher participation rates [31]. However, the lack of health education and low educatio are risk factors for adherence to the screening program. In con and knowledge of the screening are strongly associated with al. [31] highlight that women with a school diploma showed higher levels of mammog had heard of the screening program . Fin speaking ability [25] is a determinant factor for better adheren --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of info screening between women and their confidence and involvem Having a personal and/or family history of knowledge and awareness of this health problem a lapses [25,30,31]. Being married or in a couple has a to these programs [17,25,26,30]. An et al. [26] observ higher level of awareness of breast cancer-screening et al. [17] concluded that the odds of never having un in unmarried women (OR: 1.74, 95% CI [1.08-2.82] with higher participation rates [31]. However, the lack of health education and low are risk factors for adherence to the screening progra and knowledge of the screening are strongly associa al. [31] highlight that women with a school diplom degree showed higher levels of m had heard of the screening program (OR: 36.250, p < speaking ability [25] is a determinant factor for bette --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the lev screening between women and their confidence and Having a personal and/or family history of cancer has been related to better knowledge and awareness of this health problem and with early detection of future relapses [25,30,31]. Being married or in a couple has also been related to higher adherence to these programs [17,25,26,30]. An et al. [26] observed that being married is related to a higher level of awareness of breast cancer-screening programs . Shon et al. [17] concluded that the odds of never having undergone mammography were higher in unmarried women . Older age has also been associated with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27,31] are risk factors for adherence to the screening program. In contrast, high educational level and knowledge of the screening are strongly associated with higher participation. Lee et al. [31] highlight that women with a school diploma or academic degree showed higher levels of mammography use, as did those who had heard of the screening program . Finally, having a good Englishspeaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast cancer screening between women and their confidence and involvement in healthcare systems. Having a personal and/or family history of cancer has been related knowledge and awareness of this health problem and with early detection of f lapses [25,30,31]. Being married or in a couple has also been related to higher ad to these programs [17,25,26,30]. An et al. [26] observed that being married is rel higher level of awareness of breast cancer-screening programs . Older age has also been as with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22, are risk factors for adherence to the screening program. In contrast, high educatio and knowledge of the screening are strongly associated with higher participatio al. [31] highlight that women with a school diploma or a degree showed higher levels of mammography use, as did th had heard of the screening program . Finally, having a good speaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about brea screening between women and their confidence and involvement in healthcare s Having a personal and/or family history of cancer has been knowledge and awareness of this health problem and with early dete lapses [25,30,31]. Being married or in a couple has also been related to to these programs [17,25,26,30]. An et al. [26] observed that being mar higher level of awareness of breast cancer-screening programs . Older age has als with higher participation rates [31]. However, the lack of health education and low educational level are risk factors for adherence to the screening program. In contrast, high and knowledge of the screening are strongly associated with higher pa al. [31] highlight that women with a school diploma showed higher levels of mammography use had heard of the screening program . Finally, havin speaking ability [25] is a determinant factor for better adherence (p = 0. --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information a screening between women and their confidence and involvement in he Having a personal and/or family history of knowledge and awareness of this health problem a lapses [25,30,31]. Being married or in a couple has a to these programs [17,25,26,30]. An et al. [26] observ higher level of awareness of breast cancer-screening et al. [17] concluded that the odds of never having un in unmarried women (OR: 1.74, 95% CI [1.08-2.82] with higher participation rates [31]. However, the lack of health education and low are risk factors for adherence to the screening progra and knowledge of the screening are strongly associa al. [31] highlight that women with a school diplom degree showed higher levels of m had heard of the screening program (OR: 36.250, p < speaking ability [25] is a determinant factor for bette --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the lev screening between women and their confidence and Having a personal and/or family history of cancer has been related to better knowledge and awareness of this health problem and with early detection of future relapses [25,30,31]. Being married or in a couple has also been related to higher adherence to these programs [17,25,26,30]. An et al. [26] observed that being married is related to a higher level of awareness of breast cancer-screening programs . Shon et al. [17] concluded that the odds of never having undergone mammography were higher in unmarried women . Older age has also been associated with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27,31] are risk factors for adherence to the screening program. In contrast, high educational level and knowledge of the screening are strongly associated with higher participation. Lee et al. [31] highlight that women with a school diploma or academic degree showed higher levels of mammography use, as did those who had heard of the screening program . Finally, having a good Englishspeaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast cancer screening between women and their confidence and involvement in healthcare systems. Having a personal and/or family history of cancer has been related knowledge and awareness of this health problem and with early detection of f lapses [25,30,31]. Being married or in a couple has also been related to higher ad to these programs [17,25,26,30]. An et al. [26] observed that being married is rel higher level of awareness of breast cancer-screening programs . Older age has also been as with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22, are risk factors for adherence to the screening program. In contrast, high educatio and knowledge of the screening are strongly associated with higher participatio al. [31] highlight that women with a school diploma or a degree showed higher levels of mammography use, as did th had heard of the screening program . Finally, having a good speaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about brea screening between women and their confidence and involvement in healthcare s Having a personal and/or family history of cancer has been knowledge and awareness of this health problem and with early dete lapses [25,30,31]. Being married or in a couple has also been related to to these programs [17,25,26,30]. An et al. [26] observed that being mar higher level of awareness of breast cancer-screening programs . Older age has als with higher participation rates [31]. However, the lack of health education and low educational level are risk factors for adherence to the screening program. In contrast, high and knowledge of the screening are strongly associated with higher pa al. [31] highlight that women with a school diploma showed higher levels of mammography use had heard of the screening program . Finally, havin speaking ability [25] is a determinant factor for better adherence (p = 0. --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information a screening between women and their confidence and involvement in he Having a personal and/or family history of cancer has been knowledge and awareness of this health problem and with early dete lapses [25,30,31]. Being married or in a couple has also been related to to these programs [17,25,26,30]. An et al. [26] observed that being mar higher level of awareness of breast cancer-screening programs . Older age has als with higher participation rates [31]. However, the lack of health education and low educational level are risk factors for adherence to the screening program. In contrast, high and knowledge of the screening are strongly associated with higher pa al. [31] highlight that women with a school diploma showed higher levels of mammography use had heard of the screening program . Finally, havin speaking ability [25] is a determinant factor for better adherence (p = 0. --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information a screening between women and their confidence and involvement in he Having a personal and/or family history of cancer has been knowledge and awareness of this health problem and with early dete lapses [25,30,31]. Being married or in a couple has also been related to to these programs [17,25,26,30]. An et al. [26] observed that being mar higher level of awareness of breast cancer-screening programs . Older age has als with higher participation rates [31]. However, the lack of health education and low educational level are risk factors for adherence to the screening program. In contrast, high and knowledge of the screening are strongly associated with higher pa al. [31] highlight that women with a school diploma showed higher levels of mammography use had heard of the screening program . Finally, havin speaking ability [25] is a determinant factor for better adherence (p = 0. --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information a screening between women and their confidence and involvement in he Having a personal and/or family history of cancer has been related knowledge and awareness of this health problem and with early detection of lapses [25,30,31]. Being married or in a couple has also been related to higher to these programs [17,25,26,30]. An et al. [26] observed that being married is r higher level of awareness of breast cancer-screening programs . Older age has also been with higher participation rates [31]. However, the lack of health education and low educational level [15,19,2 are risk factors for adherence to the screening program. In contrast, high educat and knowledge of the screening are strongly associated with higher participat al. [31] highlight that women with a school diploma or degree showed higher levels of mammography use, as did had heard of the screening program . Finally, having a goo speaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about bre screening between women and their confidence and involvement in healthcare Having a personal and/or family history of cancer has been related to better knowledge and awareness of this health problem and with early detection of future relapses [25,30,31]. Being married or in a couple has also been related to higher adherence to these programs [17,25,26,30]. An et al. [26] observed that being married is related to a higher level of awareness of breast cancer-screening programs . Shon et al. [17] concluded that the odds of never having undergone mammography were higher in unmarried women . Older age has also been associated with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27,31] are risk factors for adherence to the screening program. In contrast, high educational level and knowledge of the screening are strongly associated with higher participation. Lee et al. [31] highlight that women with a school diploma or academic degree showed higher levels of mammography use, as did those who had heard of the screening program . Finally, having a good Englishspeaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast cancer screening between women and their confidence and involvement in healthcare systems. A study including 159 ethnically diverse women showed that after educational sessions, a decrease of 5% in the lack of knowledge about breast screening was observed [22] . Moreover, there was an improvement in the ability to identify the correct starting age for screening after the session and the frequency of screening . Another practice that seems to be associated with greater participation in screening programs is having an annual health checkup [25,26,28] . According to An et al. [26], women are 16 times more likely to participate in the screening program if they undergo this health control . Orji et al. conclude that women who had received an annual health checkup were more likely to participate in breast cancer-screening programs compared with those who did not receive it [28]. Having a personal and/or family history of cancer has been related to better knowledge and awareness of this health problem and with early detection of future relapses [25,30,31]. Being married or in a couple has also been related to higher adherence to these programs [17,25,26,30]. An et al. [26] observed that being married is related to a higher level of awareness of breast cancer-screening programs . Shon et al. [17] concluded that the odds of never having undergone mammography were higher in unmarried women . Older age has also been associated with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27,31] are risk factors for adherence to the screening program. In contrast, high educational level and knowledge of the screening are strongly associated with higher participation. Lee et al. [31] highlight that women with a school diploma or academic degree showed higher levels of mammography use, as did those who had heard of the screening program . Finally, having a good Englishspeaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast cancer screening between women and their confidence and involvement in healthcare systems. Having a personal and/or family history of knowledge and awareness of this health problem an lapses [25,30,31]. Being married or in a couple has a to these programs [17,25,26,30]. An et al. [26] observ higher level of awareness of breast cancer-screening et al. [17] concluded that the odds of never having un in unmarried women with higher participation rates [31]. However, the lack of health education and low are risk factors for adherence to the screening progra and knowledge of the screening are strongly associa al. [31] highlight that women with a school diplom degree showed higher levels of m had heard of the screening program (OR: 36.250, p < 0 speaking ability [25] is a determinant factor for bette --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the leve screening between women and their confidence and Having a personal and/or family history of cancer ha knowledge and awareness of this health problem and with ea lapses [25,30,31]. Being married or in a couple has also been re to these programs [17,25,26,30]. An et al. [26] observed that bei higher level of awareness of breast cancer-screening programs . Older age with higher participation rates [31]. However, the lack of health education and low education are risk factors for adherence to the screening program. In contr and knowledge of the screening are strongly associated with h al. [31] highlight that women with a school diploma showed higher levels of mammogra had heard of the screening program . Finall speaking ability [25] is a determinant factor for better adherenc --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of inform screening between women and their confidence and involveme Having a personal and/or family history of knowledge and awareness of this health problem an lapses [25,30,31]. Being married or in a couple has a to these programs [17,25,26,30]. An et al. [26] observ higher level of awareness of breast cancer-screening et al. [17] concluded that the odds of never having un in unmarried women with higher participation rates [31]. However, the lack of health education and low are risk factors for adherence to the screening progra and knowledge of the screening are strongly associa al. [31] highlight that women with a school diplom degree showed higher levels of m had heard of the screening program (OR: 36.250, p < 0 speaking ability [25] is a determinant factor for bette --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the leve screening between women and their confidence and Having a personal and/or family history of cancer has been related to better knowledge and awareness of this health problem and with early detection of future relapses [25,30,31]. Being married or in a couple has also been related to higher adherence to these programs [17,25,26,30]. An et al. [26] observed that being married is related to a higher level of awareness of breast cancer-screening programs . Shon et al. [17] concluded that the odds of never having undergone mammography were higher in unmarried women . Older age has also been associated with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27,31] are risk factors for adherence to the screening program. In contrast, high educational level and knowledge of the screening are strongly associated with higher participation. Lee et al. [31] highlight that women with a school diploma or academic degree showed higher levels of mammography use, as did those who had heard of the screening program . Finally, having a good Englishspeaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast cancer screening between women and their confidence and involvement in healthcare systems. Having a personal and/or family history of knowledge and awareness of this health problem an lapses [25,30,31]. Being married or in a couple has a to these programs [17,25,26,30]. An et al. [26] observ higher level of awareness of breast cancer-screening et al. [17] concluded that the odds of never having un in unmarried women with higher participation rates [31]. However, the lack of health education and low are risk factors for adherence to the screening progra and knowledge of the screening are strongly associa al. [31] highlight that women with a school diplom degree showed higher levels of m had heard of the screening program (OR: 36.250, p < 0 speaking ability [25] is a determinant factor for bette --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the leve screening between women and their confidence and Having a personal and/or family history of cancer ha knowledge and awareness of this health problem and with ea lapses [25,30,31]. Being married or in a couple has also been re to these programs [17,25,26,30]. An et al. [26] observed that bei higher level of awareness of breast cancer-screening programs . Older age with higher participation rates [31]. However, the lack of health education and low education are risk factors for adherence to the screening program. In contr and knowledge of the screening are strongly associated with h al. [31] highlight that women with a school diploma showed higher levels of mammogra had heard of the screening program . Finall speaking ability [25] is a determinant factor for better adherenc --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of inform screening between women and their confidence and involveme Having a personal and/or family history of cancer has been related to b knowledge and awareness of this health problem and with early detection of futur lapses [25,30,31]. Being married or in a couple has also been related to higher adher to these programs [17,25,26,30]. An et al. [26] observed that being married is related higher level of awareness of breast cancer-screening programs . S et al. [17] concluded that the odds of never having undergone mammography were hig in unmarried women . Older age has also been associ with higher participation rates [31]. However, the lack of health education and low educational level [15,19,22,25,27 are risk factors for adherence to the screening program. In contrast, high educational l and knowledge of the screening are strongly associated with higher participation. Le al. [31] highlight that women with a school diploma or acade degree showed higher levels of mammography use, as did those had heard of the screening program . Finally, having a good Eng speaking ability [25] is a determinant factor for better adherence . --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information about breast ca screening between women and their confidence and involvement in healthcare syste Having a personal and/or family history of cancer has been rel knowledge and awareness of this health problem and with early detectio lapses [25,30,31]. Being married or in a couple has also been related to hig to these programs [17,25,26,30]. An et al. [26] observed that being married higher level of awareness of breast cancer-screening programs . Older age has also b with higher participation rates [31]. However, the lack of health education and low educational level [15 are risk factors for adherence to the screening program. In contrast, high ed and knowledge of the screening are strongly associated with higher partic al. [31] highlight that women with a school diploma showed higher levels of mammography use, as had heard of the screening program . Finally, having a speaking ability [25] is a determinant factor for better adherence (p = 0.0021 --- Health Information Gap and Medical Mistrust Table 4 shows the main factors related to the levels of information abou screening between women and their confidence and involvement in health It is demonstrated that a good doctor-patient relationship helps to increase levels of adherence [30] , which encourages healthcare providers to recommend patients participate in screening programs [25]. In a study carried out in migrant women living in the US, longer length of stay and acculturation have been related to higher levels of adherence [29]. They also showed that higher levels of medical distrust were associated with lower participation in screening [29], although this factor was found to be not significantly associated with greater participation in another study [24]. However, acculturation also seems to be a protective factor according to the study by An et al. [26]. --- Discussion As Krieger demonstrates, the exacerbation of inequities during the COVID-19 pandemic owing to structural racism in the US [32]; these results agree with the existing cultural barriers due to racism and injustices in healthcare systems across the world today. Johnson-Agbakwu et al. showed the inequities in mortality between white and Black populations [33] and how these have been exacerbated by the recent COVID-19 pandemic, seeking to propose measures to resolve this situation. Also in Italy, a study on the epidemiological characteristics of COVID-19 cases in non-Italian nationals confirmed that compared with Italians, undocumented foreigners have a greater risk of severe clinical outcomes [34]. Along the same lines, Ponce-Blandón et al. analyzed the complex reality faced by migrants who cross the Strait of Gibraltar for a better life [35], identifying various cultural barriers encountered by health professionals who were unable to provide culturally appropriate help when they were caring for people of different races/ethnicities: factors such as language, religious beliefs, cultural habits and prejudices, among others [36]. These factors could be the reason for lower participation in and a greater lack of knowledge of population-based health and early-detection programs. Molina-Barceló et al. [37] identified the profile of women who participated to a lesser extent in breast cancer screening in Spain: young, migrant and/or of nonwhite race and/or ethnicity. The results on low incomes are consistent with other research that has studied barriers to accessing health services in general, not only in relation to adherence to screening programs. Zhou et al. [38] and Shahar et al. [39] studied Chinese and Malaysian populations and demonstrated a direct relationship between health variables and economic resources, which are interrelated, creating the so-called Hortwiz circle [40]: poverty-unhealthy-low income-poverty, suggesting that public health strategies should be directed at vulnerable populations. Lund et al. [41] found a significant relationship between poverty levels and mental illnesses owing to social exclusion, stress and barriers to accessing healthcare, demonstrating the influence of a lack of economic resources on physical, mental and social health across the world. Some studies show that a large population in the US are still without health insurance and that this population tends to be those with fewer resources [42]. Despite having private health insurance, the barriers to accessing basic health programs continue to be greater among those with fewer resources [43]. According to Serral et al. [44], the Spanish women who had higher participation rates in breast cancer screening were those between 60 and 69 years, with high incomes, with private health insurance and born in a country with a Human Development Index score over 0.8, which supports the results obtained in our study. We have also demonstrated the importance of educating the population and informing women about breast cancer-screening programs. In fact, other studies have highlighted the importance of implementing health education programs in schools, with the aim of training children to understand health information from an early age [45]. Other studies have also shown the multiple positive effects of the implementation of annual health checkups and strongly recommend them to improve lifestyle habits [46]. Although population screening programs are intended to promote health equity, it cannot be denied that there are still inequities, with a tendency to lower participation in those social groups who are vulnerable, determined by all the barriers discussed above. For example, the participation rates in cancer screenings by age in the US, where 88% of the articles in our research come from, do not meet the required standards [47]. Therefore, boosting adherence in these vulnerable populations is a necessary global action. Given the main barriers encountered in this study, some measures are proposed that aim to improve screening coverage in vulnerable populations. The implementation of awareness programs for migrant and/or nonwhite women could be useful to raise their awareness of the importance of breast cancer screening. To be accessible to them, the campaigns could be implemented in places related to their everyday lives, such as schools, the media and/or supermarkets. An example of this was conducted by Alkhasawneh et al. [48], who implemented a breast cancer education program for Arab women to increase knowledge of the subject and participation in screenings, and the results were clearly positive. Serral et al. [44] invited us to inform the population, focusing on women from the most vulnerable groups, of the benefits and risks of participating in a breast cancer-screening program, so that women can make informed decisions. Moreover, work should be conducted on the implementation of annual health checkups, with the intention of recruiting women who are susceptible to neglecting screening. In this regard, we should work with health professionals because they are the key actors to enrolling patients who meet the requirements-informing and reminding patients of the importance of participating in screening programs. In addition, efforts should be aimed to avoid the health information gap and mistrust in healthcare systems in order to overcome the inequities that exacerbate the lack of adherence. Ponce-Blandón et al. [35] identified some difficulties to managing cultural differences from healthcare workers' perspectives and proposed measures to educate these professionals on the values of diversity and respect. It is crucial to guarantee medical trust in healthcare professionals and in healthcare systems in order to improve doctor-patient relationships, increasing satisfaction and the adherence to screening, with a particular focus on the diversity and cultural integration of all people. Most of the studies were descriptive observational studies , which gives a low level of evidence to the results; only two experimental studies were included . However, given that the objective of this research was not to evaluate a health intervention but rather to analyze the factors and barriers that influence the lack of adherence to breast cancerscreening programs, we expected to find more descriptive studies than other types. Another limitation was that most of the publications analyzed were carried out in the US ; only two of the 17 were conducted outside of the US, one in Asia and one in Australia. For this reason, we encourage European and African researchers, as well as professionals across the world, to focus their research on this vital topic to gain health equity, which is included as an objective in the 2030 Agenda for Sustainable Development . --- Conclusions Multiple barriers have been found to affect adherence to breast cancer-screening programs. The target populations with the lowest adherence in our study were Black, Asian, Hispanic and foreign women. Those with barriers are detailed in Scheme 2. A lack of knowledge of these screening programs and medical mistrust in healthcare systems owing to cultural differences also exacerbate this health issue. In general, the adoption and dissemination of breast cancer-screening programs is still deficient in a large part of vulnerable populations, where the influential barriers are associated with race and/or ethnicity and low socioeconomic level . However, we observed important favorable changes in those cases in which the population undergoes health educational sessions, is informed about the screening or is recommended by health professionals to attend. Therefore, we propose interventions to avoid these social disparities and avoid the low levels of adherence in vulnerable populations, which are described in Scheme 2. We should mention that more in-depth studies on this health problem will be very useful to continue improving participation in and relieving the difficulties hindering women's adherence to these early-detection programs. rather to analyze the factors and barriers that influence the lack of adherence to breast cancer-screening programs, we expected to find more descriptive studies than other types. Another limitation was that most of the publications analyzed were carried out in the US ; only two of the 17 were conducted outside of the US, one in Asia and one in Australia. For this reason, we encourage European and African researchers, as well as professionals across the world, to focus their research on this vital topic to gain health equity, which is included as an objective in the 2030 Agenda for Sustainable Development . --- Conclusions Multiple barriers have been found to affect adherence to breast cancer-screening programs. The target populations with the lowest adherence in our study were Black, Asian, Hispanic and foreign women. Those with barriers are detailed in Scheme 2. A lack of knowledge of these screening programs and medical mistrust in healthcare systems owing to cultural differences also exacerbate this health issue. In general, the adoption and dissemination of breast cancer-screening programs is still deficient in a large part of vulnerable populations, where the influential barriers are associated with race and/or ethnicity and low socioeconomic level . However, we observed important favorable changes in those cases in which the population undergoes health educational sessions, is informed about the screening or is recommended by health professionals to attend. Therefore, we propose interventions to avoid these social disparities and avoid the low levels of adherence in vulnerable populations, which are described in Scheme 2. We should mention that more in-depth studies on this health problem will be very useful to continue improving participation in and relieving the difficulties hindering women's adherence to these early-detection programs. --- Author Contributions: L.P.-C. collected all the information and wrote the main text of the manuscript; J.A.P.-B. gave constructive guidance and made critical revisions; P.I. and A.G. supervised the final manuscript; and F.M. designed the research, conceived the manuscript and offered guidance throughout the process. All authors have read and agreed to the published version of the manuscript.
Breast cancer is the most prevalent cancer in the world. Early diagnosis can prevent cancer growth and therefore saving lives. Breast cancer screening through periodic mammography has been effective in decreasing mortality. However, adherence to screening does not meet the desired expectations in all population groups. The objective of this review is to identify the barriers that affect adherence to breast cancer-screening programs in an ethnically diverse group of women in order to propose public health measures to increase adherence. Although the dissemination of breast cancer-screening programs is still lacking in most of the vulnerable populations, we observed important favorable changes in those cases in which the population undergoes health education sessions, they are informed about cancer-screening programs or they seek medical attention. Therefore, implementing awareness campaigns focused on these populations should be promoted, as well as working on healthcare professional cultural competence to improve breast cancer-screening adherence worldwide.
INTRODUCTION A family's socioeconomic status describes their level of access to and control over economic and social resources relative to that of other families. Family SES has been recognized as an important determinant of children's educational opportunities and outcomes [1][2][3][4] , but less is known about the stability of the influence of family SES on children's school performance over longer historical periods [5][6][7][8] . Family SES captures a multitude of factors that interact to shape children's neurocognitive development through synergistic biological pathways [9][10][11] , although it is typically operationalized by parents' educational attainment, occupation, and income status 12,13 . A family's SES represents their economic capital, for example, their access to good nutrition, high-quality housing, and safe transport; their cultural capital, including the competencies, skills, values, and aspirations that the family holds; and their social capital, which refers to a family's network of personal and professional relationships 14,15 . These characteristics of family SES are embedded within a wider ecological framework that spansamong other things-the neighborhood, local labor markets, and the quality of nearby schools 16 . The influence of family SES on their offspring's education emerges from children's experiences within the family home and the conditions that inform their wider environment. For example, high SES parents have been found to talk on average more often with their children, using larger and more complex vocabularies, and referring to more abstract concepts than parents of lower SES [17][18][19] . In turn, children from high SES families develop greater verbal ability themselves 20 and become more familiar with the language patterns and linguistic codes that prevail in formal educational settings and that are expected by teachers than low SES children 21,22 . The language environment that children experience is only one of many pathways through which family background exerts its pervasive influence on child development [9][10][11] . Yet, it exemplifies how children become differently equipped to meet the demands of formal education and to maximize its learning opportunities depending on their family's SES. The association between family background and school performance is evident before children start primary school 23,24 , and it persists over the course of compulsory education 25,26 . In fact, as children progress through school, the influence of their families' background increases, and differences in school performance between high and low SES children magnify 2,26,27 . At the same time, children's differences in school performance are highly stable from the first years of primary school through to the end of secondary school, with previous studies reporting correlations of 0.60 on average 26,28,29 . This finding implies that children who perform poorly at the beginning of formal schooling also tend to struggle throughout the primary and secondary school by comparison to the other students . As a result, they are less likely to attain further educational qualifications after completing compulsory schooling and to experience the favorable life outcomes of children who perform well early on in school 27,30 . The rank-order stability of children's differences in school performance across the school years is statistically independent of changes in the influence of their predictors. That is, how children perform in school relative to each other may not change across the duration of compulsory schooling, and yet the influence of family SES on children's differences in school performance could be increasing, or decreasing, or remain stable. In societies that reward educational achievement, the combination of the rank-order stability and the widening of the SES-related differences in school performance begets the reproduction and perpetuation of social and economic inequality across generations 31 . Educational policy in putatively meritocratic societies, like Britain, has traditionally focused on creating equal learning opportunities 32,33 . Equal educational opportunity cannot, however, translate into equal educational outcomes for children, who differ in their abilities to realize those opportunities 34,35 . To eliminate systematic inequality in educational outcomes, both learning opportunities and learning resources must be distributed so that students can achieve the same outcomes regardless of individual barriers and different starting conditions. An example of such distribution efforts is awarding grants to schools, which enroll pupils from impoverished and unstable family homes to fund extra educational resources that these pupils need to overcome their disadvantages 36 . If this and similar policies were effective, a reduction in the influence of family background on children's school performance should occur. Conversely, other education policies may, perhaps inadvertently, strengthen the relation between family SES and children's education. For example, when school systems are highly differentiated, because they select students at relatively young ages into rigid academic and vocational tracks, the influence of family background increases, as does students' inequality in educational outcomes 37,38 . Besides the influences of educational policy, the association between family SES and children's school performance is thought to have fortified because of two socio-political trends 5,7,8 . The first is the rise of socioeconomic inequality across the world that causes a growing gap in the access to and control over resources between the rich and poor 38 . The negative consequences of this development are particularly noticeable during periods of recession and austerity. Times of economic hardship, such as during the financial crisis of 2008 or the Covid-19 pandemic, are challenging for all members of society but their impact is most dramatic for low SES families with young children, who suffer the greatest risks for unemployment, financial debt, and social exclusion [39][40][41][42] . Children who grow up in low SES family homes during times of economic hardship are likely to experience significantly worse early life environments compared to low SES children who are born during more prosperous periods. As a result of the increased inequality in families' socioeconomic resources, the association between family SES and children's school performance may strengthen 5,7,43 . A country's economic climate may be somewhat independent of its contemporaneous educational policy. While public expenditure for education is unlikely to increase during times of economic hardship, governments may target their investments toward specific areas of the education sector, for example reducing achievement gaps in early years education versus widening participation in tertiary education. It is therefore possible that the effects of the economic climate and those of the respective education policies cancel out or reinforce each other in their influence on the relation between family SES and children's education outcomes. The second socio-political trend likely to strengthen the influence of family SES on children's educational achievement is parents' increasingly differential investment in their offspring's learning. Students around the world engage now in a myriad of organized learning activities that take place outside formal classrooms , aimed at improving school performance 44 . The extent to which families can afford for their children to participate in these activities, for example, private tutoring, online courses, cram schools, and learning center franchises 45 , depends on their SES, as do their attitude towards, appreciation of, and involvement with them 22,44,46,47 . The effects of parents' differential education investment on children's school performance may be further magnified by policies that foster the market orientation of schools, for example, the introduction of league tables, parent representation on school governing bodies, and parent choice over which schools to send their children to 32 . Parents who are more invested in their children's education will exhaust the opportunities that schools' market orientation affords to elevate their offspring's education, while children with less invested parents are unlikely to experience any benefits. We report here an analysis of the stability of the association between family SES and children's primary school performance in Britain over 95 years . We focused on primary school performance for three reasons. First, children's differences in school performance are largely stable over time, with primary school performance predicting later school performance and long-term educational achievement [26][27][28][29][30] . Second, influences of family SES on education can be differentiated into 'primary' and 'secondary' effects, with the former referring to the association between SES and academic ability and the latter to other SES-related factors that inform educational choices and decision-making, like for example the affordability of tuition fees 48 . Primary school performance captures 'primary effects' in the reproduction of educational inequality, because primary schooling was state-funded and compulsory to attend across the periods and populations studied here, with negligible confounding due to 'secondary' effects. Third, primary school education has changed little in its structure and format over the past 150 years, by contrast to secondary and tertiary education across Britain. The principal goal of primary education-to equip children with the knowledge and skills essential for successfully participating in society -has remained the same since its inception 49 . --- RESULTS --- Associations between family SES and children's school performance We identified 16 birth cohort studies that sampled representative populations from Britain and were born between 1921 and 2011 . Each population cohort recorded at least one marker of family SES, including parents' education, occupation, or income, and one measure of children's school performance during the primary school years , including teacher reported grades, school exam-based performance scores, and academic and cognitive ability test scores. After excluding those with missing data on family SES or school performance, sample sizes ranged from 240 to 14,923 across population cohorts, with a total of 91,935 individuals included in the analyses. We built standardized summary indices for family SES and school performance that were adjusted for the number of available markers per child in each cohort. Figure 1 shows the raw correlations between family SES and school performance plotted across the cohorts' birth years from 1921 through 2011 . With exception of the 1980s, representative population cohorts were available for all decades from the 1920s onwards . After adjusting for cohort-specific confounders, correlations between family SES and school performance ranged from a minimum of 0.17 [95% Confidence Interval 0.10-0.23] to a maximum of 0.37 [0.28-0.46], as shown in panel of Fig. 2. Across all 16 population cohorts, we estimated the average association between family SES and children's school performance to be 0.28 [0.22-0.34], reflecting a medium effect size . By and large, the association between family SES and children's school performance varied little and inconsistently across cohorts' birth years. No systematic increasing or decreasing trends in the strength of the association could be observed across the past 95 years. Many of the larger differences in the associations occurred in cohorts born at the same time or in quick succession, suggesting that they are likely due to residual confounding from cohort-specific characteristics, rather than to meaningful time trends. --- Robustness analyses To test the robustness of our results, we repeated our analyses in those cohorts with more than 1000 participants , who were born between 1946 and 2011. After adjusting for cohort-specific confounders, family SES correlated on average 0.30 [0.25-0.36] with children's school performance ; full model details are in the SI). The associations varied minimally from 0.30 to 0.31 across cohorts. Figure . 3 shows the slopes mapped onto the cohorts' estimates, mirroring the results displayed in the forest plots and illustrating the stability of the association between family SES and children's school performance. Finally, we also tested the association between family SES and school performance in the 5 cohorts that were designed to be representative of the wider UK population at their inception . An unadjusted model produced an estimate of 0.33 [0.22-0.43], while a model that included all cohort-specific confounders was nonidentified . Differences in the estimates' effect sizes between the analyses including cohorts with N > 1000 versus those with a UK representative population are likely to be due to controlling for confounders in the former but not in the latter. The 90/10 percentile method To supplement our correlation-based results, we applied the 90/10 percentile method, which involves estimating the school performance gap between children in the lowest and highest SES deciles and comparing the gaps' magnitude across cohorts. This method, which is typically applied in sociological and economics research [5][6][7] , requires large sample sizes to reliably compare the populations at the extreme ends of the SES distribution. Figure 4 shows the results from the 90/10 percentile method in samples with more than 1000 participants , after adjusting for cohort-specific confounders. A linear regression line suggested that a minimal reduction in the gap in children's school performance between the lowest and highest family SES decile over time. However, this trend was consistently framed by very large, overlapping Confidence Intervals that signal that a true effect is unlikely. Generally, the 90/10 percentile method, which relies on extreme group comparisons, seemed to produce more spread-out estimates than our correlation-based analysis that involves the entire data distribution. --- DISCUSSION Children from low SES families perform on average worse throughout compulsory schooling than children from privileged family backgrounds, and as a result, they achieve overall fewer educational qualifications and experience less favorable life outcomes. We showed here that the association between family SES and children's school performance has remained constant across generations over the past 95 years in Britain. This finding suggests the link between family background and children's education has not been notably disrupted over the past decades. Our research advances knowledge in four ways. First, we confirm findings from the only previous study that analyzed data from British populations to test the influence of family SES on children's education across decades. In 90/10 percentile analyses of test scores from large-scale international student assessment programs, like PISA and TIMSS, Chmielewski 5 observed a global increase in the disparity in educational achievement between students from high and low SES backgrounds over 50 years. However, for Britain, Chmielewski 5 found the educational achievement gap between children from low and high SES families to be stagnant. We corroborate and extend these findings in our analyses of children's school performance in 16 population cohorts that span over 95 years. Second, our analyses revealed a correlation between family SES and children's school performance across generations of medium effect size, at least by conventional standards of effect size interpretations. This correlation estimate may appear modest, given that family SES is thought to exert pervasive, long-term influence on all important life outcomes, and that it is one of the most widely studied constructs in social science 6,9,20 . Yet, the effect size of our estimate aligns with those reported in two seminal meta-analyses, whose samples were mostly drawn from the United States. White 50 reported an association of r = 0.22 between family SES and academic achievement across 101 studies published before 1980, and Sirin 3 estimated the association to be r = 0.28 across 58 studies published between 1990 and 2000. Sirin 3 cautioned that the two meta-analytic effect sizes should not be directly compared to infer conclusions about temporal trends, because of the studies' many methodological differences. Third, our finding of a stable association between family SES and children's school performance was robust across two statistical approaches, with one relying on correlational analyses, and the other, known as 90/10 percentile method, on comparisons of extreme groups. Extreme group analyses are more sensitive to biases from small samples, cohort-specific characteristics, and shifts in data distributions than correlation estimates. Accordingly, we found here that estimates derived with the 90/10 percentile method were more spread out than those obtained from the correlational approach, although they converged on average on the same result. Fourth, our research illustrates the value of population cohort studies for studying the temporal stability of associations between social conditions and cognitive-behavioral outcomes. We capitalized on the rich data resources that are currently available in Britain, where large-scale cohort studies have been frequently conceived and followed-up 51 . Preserving these data resources, protecting their accessibility for researchers, and expanding their capacity by continuing to follow up existing population cohorts and creating new ones are key for studying societal change and, by extension, for identifying its causative factors and conditions. Despite its many strengths, our study is not without limitations. First, the population cohorts included in our analyses differed in several characteristics other than their year of birth. For example, the assessment ages of school performance ranged from age 5 to 11 years, with some cohorts recording children's school grades, others using teacher ratings, and again others including standardized achievement tests' scores. Likewise, the assessment of SES differed across cohorts: some collected repeatedly multiple indicators of family SES and others only a couple at one point in time. We argue that these data are nonetheless comparable, because each cohort applied reliable and valid measurements that were appropriate for its respective generation to assess family SES and primary school performance. We also adjusted our models for differences in cohort-specific characteristics to improve their comparability. We acknowledge that residual effects are possible and may bias our results, given the small number of observations . Second, some of the cohorts in our analyses sampled comparatively small populations that may afford low or inconsistent statistical power . To ensure the robustness of findings, we compared the results based on all 16 population cohorts to those from selection of cohorts with N > 1,000 each . We found minimal differences across both analyses, with neither suggesting a systematic increasing or decreasing trend in the association between family SES and children's school performance over time. Third, although Britain is rich in population cohort studies, they have been conceived in irregular intervals, resulting in considerable observation gaps of up to 24 years . Finally, our analyses cannot identify any shifts in the mechanisms that underlie the influence of family SES on children's school performance. That is, the causes of the association between family SES and children's school performance may have changed over time, even if the strength of their association did not change itself 52 . Our findings suggest that in Britain the association between family origin and children's education has remained stable over time, at least with regard to primary school performance, despite considerable policy efforts to the contrary 32,33 . We speculate that this stability is, at least in part, due to prioritizing the equality of educational opportunity over the equity of education 32,36,53 . Equality of education refers to a system in which all children enjoy the same learning opportunities, for example, they are taught the same curricula at the same pace by the same methods, regardless of their differences in ability, skills, and interests. By contrast, equity in education aims at reducing children's differences in educational outcomes, by distributing education resources in ways that level the playing field for all children 34,35 that is, by tailoring educational provisions to students' individual characteristics and needs . For example, equity in education can be achieved by allocating more teaching staff to instructing children who are at risk of academic failure and behavioral misconduct, while better-performing children would be looked after by fewer teachers. Although the idea of equity in education may appeal in principle, its implementation faces two significant challenges. The first is that parents of children who are well prepared for the demands of compulsory schooling are likely to object to the redistribution of education resources that potentially disadvantage their offspring. Because these parents tend to occupy societal positions of power and prestige more often than parents of children who would be the main beneficiaries of equity in education, the appetite for changing the focus of current education policy is likely to be low. Second, equity in education necessarily prescribes inequality in educational opportunity: not all children will receive the same educational provision and attention, but resources will be concentrated on those with the greatest learning needs. Prioritizing individuals in need is common practice in other policy areas where limited resources are allocated to achieve maximum benefits across the population. For example, in healthcare, costly diagnostic methods tend to be reserved for people at the greatest risk for developing a disease, such as mammograms for detecting breast cancer being offered to women aged 50 years and older, rather than to everybody regardless of gender and age. However, tailoring education provisions to children's individual needs has been traditionally met with great reluctance. We argue that this is at least partly due to education policies having historically introduced-perhaps inadvertently so-systematic disadvantages for subgroups of the population, especially those of low SES 31 . We caution, however, that previous education policies did not seek to redistribute education resources to reduce children's differences in learning outcomes but to maximize the best students' educational achievement, for example through ability streaming or tracking 37,38 . Achieving equity in education while preserving the equality of educational opportunity is a difficult balancing act that challenges education policymakers around the world 55 . Ensuring that all children have equal opportunity to benefit from the compulsory schooling that society affords should be the primary aim of educational policy in putatively meritocratic societies, like Britain. Yet, our findings suggest that children from low SES families have been persistently disadvantaged in education over the past century, arguably because they cannot make use of the learning opportunities that compulsory schooling offers to the same extent as high SES children do. In societies that selectively reward those with educational credentials, redistributing education resources to address and remediate the differential learning needs that children present with, at the start of primary school, is key to weakening the transmission of social and economic inequality across generations. --- METHODS This study was preregistered and data are available here: https://osf.io/ a8fwx/. Because data from existing population cohorts were analysed for the current study, it was not necessary to seek ethical approval here. Informed consent was obtained from the participants by the leaders of the respective population cohorts but not from the authors of the current paper. --- Cohorts We defined the following criteria for cohorts to be included in our analyses: They sample a population representative of Britain, with their geographical scope covering either the UK, a country within the UK, a recognized regional unit in the UK, or a UK city; their sample was born within a defined period , ensuring that the cohort members had been exposed to comparable economic and political conditions; and they included a valid and reliable measure of school performance during the primary school years , as well as that of at least one of the predefined indicators of family SES that children experienced before or concurrently with the assessment of their school performance. We identified cohorts that theoretically met our inclusion criteria through searching for published cohort profiles, searching through online repositories of UK cohort studies , and informal enquiries to UK researchers involved with the development, maintenance, and organization of cohort studies . --- Measures To assess family background, we extracted from each study where available mothers' and fathers' education and occupation, and family income, from all assessment waves that occurred before or concurrently with the child's assessment of school performance . All 16 cohorts recorded mothers' and/ or fathers' occupation; for 14 cohorts at least one measure of educational qualification was available; and in 5 cohorts income was assessed. We also extracted measures of children's school performance that occurred closest in time after the children's start of primary school. We included scores that stemmed from established, standardized cognitive ability tests , teacher ratings of school performance, exam performance scores, and parent reports of school performance. We did not consider scores from experimental cognitive measures or from tests that assessed abilities other than cognitive and/ or scholastic ability . --- Analysis strategy Data access regulations forbid harmonizing and pooling data across the population cohort studies included here. We therefore analyzed each cohort individually and then applied meta-analytic methods to compare findings. In each population cohort study, we recoded inadequate values as missing values ; coded variables so that higher values reflected better outcomes ; and z-transformed all variables. In each population cohort, we excluded participants who did not have at least one score on school performance and data on one SES indicator. For operationalizing family SES, we applied general concepts of social stratification, rather than trying to adopt time-invariant measures that site families within the stratification structure at the time of the respective population cohort study. Specifically, we built summary indices from all z-transformed SES indicators that were available in a cohort and adjusted them for the number of indicators available per child . SES is a formative construct that emerges from its indicators; by contrast, reflective traits, for example, ability, are thought to cause their indicators . Because SES indicators are not required to correlate or share common variance, internal consistency is not relevant for the validity of the cohorts' respective SES indices 13 . To capture children's differences in school performance, some population cohorts included a single measure of school performance and others multiple ones. Where multiple measures were available, we built summary indices from the z-transformed variables that were completed earliest during primary school and adjusted them for the number of measures available per child. We estimated the correlations between family SES and children's school performance in each cohort, and we then applied Fisher's z-transformation to statistically compare the correlations. Next we fitted meta-regression models, using the R package metaphor 56 , to adjust the Fisher's z-transformed correlation coefficients for cohort-specific characteristics, which we mean-centered, including the type of assessment of school performance; number of available indicators for SES and school performance; age of assessment of SES and school performance; cohorts' geographical scope; and % of data missing due to attrition, and selective follow-up and data linkage . --- DATA AVAILABILITY This study was pre-registered and data are available here: https://osf.io/a8fwx/. --- CODE AVAILABILITY The analysis code is available from the corresponding author upon request. --- Reporting summary Further information on research design is available in the Nature Research Reporting Summary linked to this article. --- --- COMPETING INTERESTS The authors declare no competing interests. --- ADDITIONAL INFORMATION Supplementary information The online version contains supplementary material available at https://doi.org/10.1038/s41539-022-00120-3. Correspondence and requests for materials should be addressed to Sophie von Stumm. Reprints and permission information is available at http://www.nature.com/ reprints Publisher's note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
In Britain and elsewhere, the influence of family socioeconomic status (SES) on education is already evident in primary school, and it persists and increases throughout the school years, with children from impoverished families earning lower grades and obtaining fewer educational qualifications than children from more privileged backgrounds. Reducing the effect of family background on children's education is a pivotal aim of educators, policymakers, and researchers, but the success of their efforts is poorly evidenced to date. Here, we show for the first time that over 95 years in Britain the association between family SES and children's primary school performance has remained stable. Across 16 British population cohorts born between 1921 and 2011 (N = 91,935), we confirmed previous findings of a correlation between family SES and children's school performance of 0.28 [95% Confidence Interval 0.22-0.34], after adjusting for cohort-specific confounders. Contrary to the popular assumption that family background inequality has increased over time, we observed only minimal differences in the association between family SES and school performance across British cohorts. We argue that education policies must prioritize equity in learning outcomes over equality in learning opportunities, if they seek to disrupt the perpetuation of social and economic inequality across generations. We speculate that the influence of family SES on children's education will only noticeably weaken if primary education settings become better equipped to meet and remediate the children's differential learning needs.
Objective: Neuropsychology is in a nascent stage of understanding the mechanisms that link social forces, psychosocial experiences, and brain health. Discrimination is associated with lower quality of life, higher stress, and worse physical health outcomes in Latinx, but contradictory findings in prior research complicate our understanding of its relationship to cognition. These contradictory results may be explained by heterogeneity within the broad category of Latinx, a cultural identity that requires more nuanced conceptualization. Immigration status is a primary social identifier for Latinx people that carries significant stigma. However, prior research found enculturation promotes better physical and mental health outcomes in immigrants compared to their USborn counterparts, which may protect immigrant Latinx from the cognitive costs of discrimination. The current study hypothesized that the effect of discrimination on cognition will be stronger in US-born Latinx compared to immigrant Latinx. Participants and Methods: We partnered with 1,023 neurologically healthy, community dwelling Latinx adults ; M education=12.5; 69% women) in a prospective cohort study in NYC investigating risks factors for Alzheimer's disease. Immigration status was determined by selfreport of birthplace. Measures of attention, language, and memory were administered by bilingual examiners in the participants' selfselected preferred language of English or Spanish . Discrimination, measured with the Everyday Discrimination Scale and Major Experiences of Discrimination Scale, was chronicity coded to weigh experiences of discrimination according to yearly chronicity. Linear regression models were employed for US-born and immigrant participants to assess the relationship between both discrimination measures and each cognitive measure. Results: Compared to US-born Latinx , immigrant Latinx were older, had fewer years of school, had lower income, and were much more likely to have chosen to be assessed in Spanish. Immigrants reported experiencing significantly fewer everyday and major experiences of discrimination than nonimmigrants. In unadjusted models, discrimination did not predict cognitive performance among US-born Latinx. Among immigrant Latinx, more major experiences of discrimination across the lifetime predicted better phonemic = 4.167, p<0.05, R 2 =0.017) and semantic fluency = 3.304, p<0.05, R 2 =0.013) but was not associated with measures of attention or memory. Conclusions: Discrimination is an important life stressor for Latinx people living in the US, particularly when its impact is summed across intersectional identities. The current study is among the first to explore the potential cognitive https://doi.org/10.1017/S1355617723001790 Published online by Cambridge University Press impact of discrimination within a group of Latinx adults. The described relationship between discrimination and language performance in this cohort may be confounded by the language in which cognitive tests were administered. Future studies should consider how discrimination measures may be limited in their ability to accurately capture the experiences of US-born and immigrant Latinx groups and expand the measurement of cognition to additional domains. Objective: Code-switching is when bilingual individuals alternate between two languages in the same conversation. Some studies find that code-switching frequency is associated with executive functioning, while others do not. Individual attitudes towards bilingual language use and code-switching may explain the inconsistency in the literature. For instance, greater positive attitudes towards code-switching may be associated with more likelihood to engage in that practice and thus strengthen the cognitive benefit in executive function. Additionally, code-switching between English and Spanish has been stigmatized in the U.S., therefore it is unclear what sociocultural factors may predict positive attitudes. In this study, we assessed Latinx bilinguals' attitudes on codeswitching and investigated their relationship with code-switching frequency, sociodemographic and linguistic factors, and executive functioning. Participants and Methods: Participants were 525 community-dwelling English-Spanish bilingual Latinx adults from the Offspring study ;Meducation= 12.62 ; 71% women; 41% tested in English, 75% immigrant). A language history questionnaire assessed for bilingualism and code-switching frequency. Participants completed 7 questions on code-switching attitudes on a 7-point Likert scale ranging from Strongly Disagree to Strongly Agree , that were summed for a total score with higher scores indicating more positive attitudes. Executive functioning was assessed with the NIH Toolbox Cognition battery, verbal fluencies, and the digit span test. Sociodemographic and linguistic factors included age, sex, education, immigrant status, parental years of education, English and Spanish proficiency , and testing language. General linear models evaluated the association of code-switching attitudes on executive function, after adjusting for relevant covariates. Results: Positive code-switching attitudes were correlated with greater code-switching, r=.33, p<.001. Younger age r=-.11, being born in the US t=-2.05, greater English proficiency r=.15, and English dominance t=2.22, were associated with more positive code-switching attitudes . Sex, education, parental years of education, and Spanish proficiency were not associated with code-switching attitudes. Overall models of attitudes with executive function indicated that positive code-switching attitudes were associated with worse visual working memory = -2.75, 95% CI [-0.14, -0.02]) after adjusting for age, sex, education, immigration status, parental years of education and testing language. Code-switching attitudes were not significantly associated with other executive function measures. Conclusions: Among a community-based sample of bilingual middle-aged Latinx adults, positive attitudes towards code-switching were associated with greater likelihood of codeswitching in conversations, higher English proficiency, being US born, younger age, and English language dominance but negatively associated with visual working memory. These findings indicate that code-switching attitudes are influenced by sociodemographic and linguistic factors. Additionally, the negative
the detrimental effect of educational disadvantages on processing speed in older Black adults. This may occur via benefits of social capital, which provides access to health resources and knowledge, increased social interaction, an emotional outlet allowing the ability to better cope with stress. Longitudinal analyses are needed to examine temporal patterns of associations. In addition, improving equitable access to high quality schools will improve later-life cognitive outcomes for future generations of older adults. However, for the growing number of Black older adults who will not experience the benefits of structural improvements in the education system, emotional and instrumental support may represent a modifiable psychosocial factor to reduce their disproportionate burden of cognitive morbidity.